Parental Depression Symptoms at Neonatal Intensive Care Unit Discharge and Associated Risk Factors.

OBJECTIVE: To investigate the prevalence and risk factors associated with parental depressive symptoms at neonatal intensive care unit (NICU) discharge and determine the relationships among depressive symptoms, stress, and social support. STUDY DESIGN: Parents participating in the Giving Parents Support trial (n = 300) were surveyed before NICU discharge. Depressive symptoms, stress, and social support were assessed using the Center for Epidemiological Studies Depression Scale (CESD-10), Parental Stressor Scale: Neonatal Intensive Care Unit (PSS:NICU), Perceived Stress Scale (PSS-10), and Multidimensional Scale of Perceived Social Support (MSPSS). Regression analyses examined relationships among depressive symptoms, stress, social support, and parent/infant factors. RESULTS: At NICU discharge, 45% of parents reported depressive symptoms and 43% reported elevated perceived stress. Increased odds of elevated depressive symptoms were associated with older gestational age (P = .02), female infant (P = .02), and longer length of stay (P = .045). Odds of depression were 7.87 (95% CI, 2.15-28.75) for parents of infants with gestational age ≥37 weeks compared with gestational age <28 weeks. Parental NICU stress was higher in younger parents (P < .01). Depressive symptoms were positively associated with parental stress. Each 1-point increase in PSS:NICU score was associated with a 2.1-point (95% CI, 1.6-2.9; P < .001) increase in CESD-10 score. Social support was inversely associated with depressive symptoms. CONCLUSION: The prevalence of depressive symptoms in parents at NICU discharge was high, even among parents of term infants. Older gestational age, greater parental stress, and lower levels of social support were strong correlates of depressive symptoms. Strategies to support parents, including depression screening, stress reduction strategies, and mental health referrals, are needed.

Healthcare needs and utilization patterns of sex-trafficked youth: Missed opportunities at a children's hospital.

BACKGROUND: Domestic minor sex-trafficked (DMST) youth experience profound medical and mental health consequences. This retrospective study reviewed healthcare utilization patterns and documented individualized risk factors of sex-trafficked youth in the 5 years prior to presenting to a healthcare setting. The primary aim of this study was to examine healthcare utilization patterns among DMST youth with the goal of determining opportunities for earlier identification within the healthcare system. METHODS: A chart review was conducted of all patients <18 years old referred for suspected or confirmed sex trafficking to a child and adolescent protection centre (CAPC) in an urban, academic children's hospital in Washington, DC from January 1, 2006 to March 1, 2017. Patients were seen by a child abuse pediatrician or a trauma-informed social worker in an inpatient, outpatient, or emergency department setting. Demographics and medical, psychiatric, and social history were abstracted from encounters within the hospital's healthcare system along with provider concern for DMST up to 5 years prior to their initial CAPC visit. Descriptive statistics were performed. RESULTS: Thirty-nine patients were identified with a mean age of 14.6 years (SD = 1.7). Ninety percent (n = 35/39) of patients were seen in the healthcare system within the 5 years prior to their initial CAPC visit, totaling 191 encounters. Of the visits, 57% (n = 108/191) occurred in the emergency department. The most common chief complaints for encounters were psychiatric (21%, n = 41/191). Less than half of the youth, 43%, had any documented provider concern for sex trafficking in their medical record prior to identification as DMST. CONCLUSION: Most of this cohort was previously evaluated within the healthcare system. However, there was limited provider documentation of concern for DMST despite the presence of risk factors. Provider recognition of youth at risk for DMST is crucial for providing care for youth.

Pelvic Inflammatory Disease in a Pediatric Emergency Department: Epidemiology and Treatment.

OBJECTIVES: Most adolescent cases of pelvic inflammatory disease (PID) are diagnosed in the emergency department (ED). An important step to prevent PID-related morbidity among this high-risk population is to quantify prevalence and microbial patterns and identify testing and treatment gaps. METHODS: We performed a retrospective, cross-sectional study of all visits by adolescents to an urban children's ED with an International Classification of Diseases, Ninth Revision, diagnosis of PID in 2012. We used standard descriptive statistics to quantify PID diagnoses, sexually transmitted infections (STI) testing, and treatment. RESULTS: Pelvic inflammatory disease was diagnosed in more than 9% of women with a chief complaint of abdominal/pelvic pain. Most diagnosed cases underwent some STI testing, and 40% tested positive. Seventy percent of cases received antibiotics recommended by the Centers for Disease Control and Prevention. CONCLUSIONS: There is a high prevalence of PID among adolescents in the pediatric ED. Rates of STI testing and appropriate treatment reveal gaps in diagnosis and management, representing a lost opportunity for identification and treatment of PID/STIs among high-risk adolescents.

Sensitivity and Specificity of Empiric Treatment for Sexually Transmitted Infections in a Pediatric Emergency Department.

OBJECTIVE: To determine test characteristics of provider judgment for empiric antibiotic provision to patients undergoing testing for a sexually transmitted infection. STUDY DESIGN: We conducted a retrospective cross-sectional electronic health record review of all patients aged 13-19 years who had Neisseria gonorrhoeae (GC) and Chlamydia trachomatis (CT) testing sent from an urban, academic pediatric emergency department in 2012. We abstracted data, including patient demographics, chief complaint, sexually transmitted infection test results, and treatment. We calculated test characteristics comparing clinician judgment for presumptive treatment for a sexually transmitted infection with the reference standard of the actual results of testing for a sexually transmitted infection. RESULTS: Of 1223 patient visits meeting inclusion criteria, 284 (23.2%) had a positive GC and/or CT test result. Empiric treatment was provided in 615 encounters (50.3%). Provider judgment for presumptive treatment had an overall sensitivity of 67.6% (95% CI, 61.8-73.0) and a specificity of 55% (95% CI, 51.7-58.2) for accurate GC and/or CT detection. CONCLUSIONS: Many adolescents tested for GC and CT receive empiric treatment at the initial emergency department visit. Provider judgment may lack sufficient sensitivity and specificity for identifying infected patients, resulting in the potential for undertreatment of true disease, overtreatment of uninfected patients, or both.

Development and Content Validation of the Transition Readiness Inventory Item Pool for Adolescent and Young Adult Survivors of Childhood Cancer.

Objective: The development of the Transition Readiness Inventory (TRI) item pool for adolescent and young adult childhood cancer survivors is described, aiming to both advance transition research and provide an example of the application of NIH Patient Reported Outcomes Information System methods. Methods: Using rigorous measurement development methods including mixed methods, patient and parent versions of the TRI item pool were created based on the Social-ecological Model of Adolescent and young adult Readiness for Transition (SMART). Results: Each stage informed development and refinement of the item pool. Content validity ratings and cognitive interviews resulted in 81 content valid items for the patient version and 85 items for the parent version. Conclusions: TRI represents the first multi-informant, rigorously developed transition readiness item pool that comprehensively measures the social-ecological components of transition readiness. Discussion includes clinical implications, the application of TRI and the methods to develop the item pool to other populations, and next steps for further validation and refinement.

Measures of readiness to transition to adult health care for youth with chronic physical health conditions: a systematic review and recommendations for measurement testing and development.

OBJECTIVE: Review measures of readiness to transition to adult-oriented care for youth with chronic physical health conditions. METHODS: Identified measures via online searches and reference lists and reviewed methods of development, theoretical underpinnings, characteristics, and psychometrics. Measures were classified according to American Psychological Association Division 54 Evidence-Based Assessment (EBA) Task Force criteria. Strengths and weaknesses of reviewed measures were described. RESULTS: 56 measures were identified, of which 10 met inclusion criteria for this review. 6 were disease specific and 4 were generic. Some psychometric properties were reported for each; none reported predictive validity for transition outcomes. According to EBA criteria, the 10 measures met criteria for "promising" assessment. CONCLUSIONS: Measurement development in transition readiness is still an underdeveloped area. Measures require further testing and new measures are needed. Recommendations include testing measures with larger and diverse samples, ground measures in theory, test psychometrics, and involve multiple stakeholders in measure development.

Sociodemographic risk factors, parental stress and social support in the neonatal intensive care unit.

OBJECTIVE: Investigate relationships among neonatal intensive care unit (NICU) parent demographics, reported stress and social support. DESIGN: Cross-sectional observation. SETTING: Tertiary referral NICU in Mid-Atlantic USA. PATIENTS: Parents (n=300) in the Giving Parents Support trial at enrolment. MEASURES: Psychometric scales measured general stress, parental stress, NICU stress and social support. Demographic variables included education level, health insurance type, race, relationship status, age and gender. Length of stay was used to control for illness severity. Associations and potential modifying effects were evaluated using linear regression. RESULTS: Having less than a college degree (b=-2.52, SE=0.91) and female parent gender (b=-3.42, SE=1.47) were associated with lower parental stress scores. Older age in years was associated with higher parental stress scores (b=0.21, SE=0.07) but lower NICU stress scores (b=-0.01, SE=0.01). Greater social support scores were associated with lower scores of general (b=-2.76, SE=0.39) and parental stress (b=-1.71, SE=0.47). Less than a college degree (b=-0.26, SE=0.11), Medicaid insurance (b=-0.43, SE=0.11) and black race (b=-0.56, SE=0.12) were associated with decreased social support scores. Level of social support modified the relationship between education and parental stress, with higher social support decreasing education-based differences in parental stress scores (p=0.049). CONCLUSION: Sociodemographic risk factors may not infer stress or risk in the anticipated direction. Practice and future research should focus on identifying and supporting NICU families at high risk for stress and low support. TRIAL REGISTRATION NUMBER: NCT02643472.

Knowledge and perceptions of familial and genetic risks for breast cancer risk in adolescent girls.

Evidence suggests early events might modify adult breast cancer risk and many adolescents learn of familial and genetic risks for breast cancer. Little is known about how adolescent girls understand and respond to breast cancer risk. Semi-structured interviews with 11-19 year-old girls at high-risk and population-risk for breast cancer evaluated knowledge and perceptions of breast cancer risk and risk modification. Framework analysis and descriptive statistics were utilized to analyze open-ended responses. Risk group and age differences were evaluated by Fisher's exact and McNemar's tests. Fifty-four girls (86 % of invited), 35 high-risk (65 %), and 19 population-risk (35 %) completed interviews. The most frequently reported risk for breast cancer was family history/hereditary predisposition (66 %). Only 17 % of girls were aware of BRCA1/2 genes. The majority (76 %) of high-risk girls perceive themselves to be at increased risk for breast cancer, compared to 22 % of population-risk girls (p = 0.001). Half of girls reported that women can get breast cancer before 20-years-old. The majority believe there are things women (70 %) and girls (67 %) can do to prevent breast cancer. Mother was the most frequently reported source of information for breast cancer among both high-risk (97 %) and population-risk (89 %) girls. In this study, many high-risk girls perceive themselves to be at increased risk for breast cancer, and many girls believe that breast cancer can occur in teens. Yet, most girls believe there are things women and girls can do to prevent breast cancer. Research evaluating the impact of awareness and perceptions of breast cancer risk on psychosocial, health, and risk behaviors is needed to develop strategies to optimize responses to cancer risk.

Giving parents support: a randomized trial of peer support for parents after NICU discharge.

BACKGROUND: Peer support during inpatient hospitalization has been recommended for NICU parents and can improve maternal mental health. Less is known about the impact of peer support after NICU discharge on parental mental health and infant healthcare utilization. METHODS: Three hundred families of infants approaching discharge from a Level IV NICU were randomized to receive a care notebook (control) or care notebook plus peer support for 12 months (intervention). Participants reported on measures of stress, depression, anxiety, self-efficacy, and infant healthcare utilization. Analysis compared outcomes between control and treatment groups. RESULTS: Parental depression, anxiety, stress, and self-efficacy improved significantly for all participants, yet there were no differences between control and intervention groups. Infant ED visits, hospitalizations, immunization status, and developmental status at 12 months did not differ between groups. CONCLUSIONS: Peer support after NICU discharge did not improve self-reported parental mental health measures or infant healthcare utilization. CLINICAL TRIAL REGISTRATION: NCT02643472.

HEADSS Up! Missed Opportunity for Psychosocial Screening in Hospitalized Adolescents.

OBJECTIVE: To assess the frequency and completeness of adolescent psychosocial screening documentation for adolescents and young adults hospitalized to a pediatric hospitalist medicine service. METHODS: All patients 12 to 21 years old on the hospital medicine service in an urban, academic, free standing children's hospital in the Mid-Atlantic United States from January 1, 2014, to December 31, 2015, were identified. A retrospective review was conducted to assess the frequency of documentation of a complete psychosocial screening using the Home, Education, Activities, Drugs, Sex, Suicide assessment within 48 hours of admission. Differences in screening rates according to race, sex, age, patient's medical complexity, and whether they required transfer to a higher level of care were assessed through logistic regression analyses. RESULTS: Only 5.3% (24 of 435 patients) had all 6 domains of the Home, Education, Activities, Drugs, Sex, Suicide psychosocial assessment documented. Controlling for patient characteristics (demographic, medical complexity, and level of care), the odds of being screened for sensitive domains (drugs, sex, and suicide) were higher in female patients, patients ≥16 years old, and those transferred to a higher level of care. Those considered high medical complexity were screened less across all domains. CONCLUSIONS: Overall, pediatric hospitalist documentation lacked adolescent psychosocial screening. Potential opportunities exist through screening early in the hospitalization to connect youth with services that influence health outcomes.

Featured counter-trafficking program: The CAREs clinic, a primary care medical home for commercially exploited youth.

This invited article is one of several comprising part of a special issue of Child Abuse and Neglect focused on child trafficking and health. The purpose of each invited article is to describe a specific program serving trafficked children. Featuring these programs is intended to raise awareness of innovative counter-trafficking strategies emerging worldwide and facilitate collaboration on program development and outcomes research. This article describes a medical home model of care to serve the complex medical and mental health needs of commercially sexually exploited youth. Located in Washington D.C., US, it provides coordinated ongoing primary, mental health, and reproductive health care in a trauma-informed manner. Serving 62 youth during its first year, the medical home has begun to improve access to high-quality healthcare to a very vulnerable population.

Characterizing the unmet mental health needs of urban adolescents.

BACKGROUND: Untreated mental illness among adolescents is a serious public health concern. This study offers a classification tool for mental illness based on severity and identifies a starting point for needed interventions. METHODS: We assessed the prevalence and severity of serious emotional disturbances (SED)/serious mental illnesses (SMI) among transition-aged adolescents in an urban primary care practice and identified those with unmet needs. Medical records were abstracted for 16-22 year-old patients with at least one International Classification of Diseases (ICD)-9 diagnosis of serious emotional disturbances (SED)/serious mental illnesses (SMI) seen between May 1, 2014 and July 31, 2015. The primary outcome was whether 16-22 year-old patients with serious emotional disturbances (SED)/serious mental illnesses (SMI) diagnoses were connected to mental health care and associated factors including severity of mental illness, provider referral and psychotropic medication use. RESULTS: We identified 546 patients with a mean age of 18.8 years [standard deviation (SD) ± 1.7]. Ninety percent were African American and 86% were publicly insured. Based on the illness severity criteria, 189 (35%) were categorized as "mild", 293 (54%) as "moderate" and 64 (12%) as "severe". The majority (n = 460, 84.3%) had a mental health referral, but only 219 (40%) were connected to care. Adolescents aged 18-22 had 48% fewer odds to be connected to care compared to those aged 16-17 (odds ratio, 0.52; 95% confidence interval, 0.34-0.80; p-value = 0.003). CONCLUSIONS: There is a gap in mental health services among a sample of minority adolescents in an urban environment with mental health needs. The gap is especially prevalent among older adolescents aging out of the pediatric system. Primary care providers (PCPs) are central to ensuring access to treatment, though they may be unable to meet the needs of patients with severe forms of serious emotional disturbances (SED)/serious mental illnesses (SMI). Our study characterizes the mental health needs of minority adolescents by severity and offers direction for identifying those who would most benefit from additional resources and support.

Preventative Health and Risk Behaviors Among Adolescent Girls With and Without Family Histories of Breast Cancer.

PURPOSE: To compare health behaviors (smoking, alcohol use, fruit and vegetable intake, and exercise frequency) and breast self-exam (BSE) between girls with breast cancer family history (BCFH+) and without (BCFH-) and assess associates of behaviors across all girls. METHODS: A total of 208 BCFH+ girls (11-19 years old), with first- or second-degree relatives with breast cancer or a mother with a BRCA1/2 mutation, and 112 BCFH- peers reported their health behaviors, beliefs, and psychosocial function. RESULTS: Despite higher BCFH+ girls' greater perceived breast cancer risk, there were no differences between BCFH+ and BCFH- girls on diet, exercise, alcohol initiation, or BSE. BCFH+ girls were slightly more likely to report trying cigarettes (11% vs. 5%, p = .04). In multivariable models with all girls, categorical associations with behaviors included the following: developmental and demographic factors with smoking, alcohol, diet, and exercise; family breast cancer history and experience with smoking, alcohol, and diet; psychosocial factors with smoking; girls perceptions of cancer controllability and mother support for health behaviors with alcohol, diet, exercise, and BSE; and mother behaviors with diet. CONCLUSIONS: Adolescent girls from BCFH+ families reported similar health behaviors to BCFH- peers, signaling that they are not translating their higher perceived risk into cancer control behaviors. Both uncontrollable (i.e., breast cancer experiences) and modifiable factors relate to health behaviors and warrant further investigation. Results indicate that interventions with teens and parents that target modifiable variables such as controllability perceptions, maternal modeling, and communication may relate to better health behaviors and reduced future breast cancer risk.

Sperm banking for adolescent and young adult cancer patients: sperm quality, patient, and parent perspectives.

BACKGROUND: Infertility is often a complication for adolescent and young adult males who receive cancer therapy, a problem that might be averted through using cryopreserved sperm. We aim to evaluate feasibility of offering newly diagnosed patients the opportunity to bank sperm and, to determine the beliefs and decision-making processes of patients and their parents who considered sperm banking. PROCEDURE: Eligible patients and parents were approached and offered sperm cryopreservation. Semen samples from patients who sequentially attempted sperm banking were analyzed. Questionnaires were then administered to patients and parents who had been approached about sperm banking. RESULTS: Semen samples from 68 patients were analyzed. Nine patients were azoospermic; all had been pre-treated with chemotherapy. Fifty patients completed the questionnaire. Parent and patient made the decision together to bank 80% of the time. All sons who attempted to bank and their parents felt they had made the right decision, including those who attempted but failed. CONCLUSIONS: Viable sperm can be collected successfully from adolescent and young adults who are newly diagnosed with cancer. Semen quality was dramatically reduced by one course of gonadotoxic therapy. Parents and patients want information regarding sperm cryopreservation early. Parents appear to play an important role in the decision to sperm bank. We recommend sperm banking be offered to all eligible patients.

Perceptions of Health Care Transition Care Coordination in Patients With Chronic Illness.

OBJECTIVES: Expert consensus jointly authored in 2011 by the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians supports the use of health care transition (HCT) care coordination (CC). Although gaps in care are addressed in these practice-based implementation recommendations, such recommendations have never undergone rigorous assessment. We assessed the effectiveness of implementation on quality of chronic illness care and CC during HCT for adolescents and young adults. METHODS: Adolescents and young adults with special health care needs were enrolled in a randomized HCT CC intervention. Intervention participants received HCT CC as outlined in the 2011 clinical report. Perceptions of chronic illness care quality and CC were assessed at 0, 6, and 12 months. RESULTS: Intervention participants had a Patient Assessment of Chronic Illness Care score at 12 months of 3.6 vs 3.3 compared with participants in the control group (P = .01). Intervention participants had higher average scores for patient activation (3.7 vs 3.4; P = .01), problem solving (3.8 vs 3.4; P = .02), and coordination/follow-up (3.0 vs 2.5; P < .01). The Client Perceptions of Coordination Questionnaire revealed that intervention participants had 2.5 times increased odds to endorse mostly or always receiving the services they thought they needed and had 2.4 times increased odds to have talked to their provider about future care (P < .01). CONCLUSIONS: Implementing recommended HCT CC practices improved patient or patient caregiver perception of quality of chronic illness care and CC especially among the most complex patients.

The Giving Parents Support Study: A randomized clinical trial of a parent navigator intervention to improve outcomes after neonatal intensive care unit discharge.

Parents of infants hospitalized in a neonatal intensive care unit (NICU) experience increased anxiety and stress, which may persist after discharge. The rationale and design of a randomized clinical trial assessing the impact of a 1-year, post-discharge, peer support intervention (parent navigation) on parental mental health and infant health care utilization is described. Qualitative methods guided the adaptation of an existing parent support program to target emotional and resource-related needs of NICU families. Approximately 300 parent-infant dyads were enrolled at discharge and randomized to either receive a care notebook (control group) or a parent navigator and a care notebook (intervention group). We aim to determine if the parent navigator intervention: 1) increases self-efficacy and decreases stress in parents, 2) decreases overall levels of anxiety and depression in parents, 3) decreases infant hospitalizations and emergency department visits, and 4) increases adherence to infant vaccination recommendations during 1 year of follow-up. Standardized, self-reported psychological scales to assess parent depression, anxiety, self-efficacy and social support were administered at baseline (NICU discharge) and at 1-week, 1-, 3-, 6- and 12-month intervals. Infant immunization status and health care utilization during the study period were also assessed. This paper reviews challenges and successes during implementation. If this intervention improves outcomes, NICUs may choose to provide similar parent navigation services for infants and families transitioning from the NICU to home. This study was registered with ClinicalTrials.gov (NCT02643472) on December 31, 2015.

Sexual and reproductive health care utilization and preferences reported by young women with cystic fibrosis.

BACKGROUND: This study aimed to describe and compare the sexual and reproductive health (SRH) care utilization among young women with cystic fibrosis (CF) with the general United States (U.S.) population. METHODS: Women with CF ages 15-24years from five geographically diverse U.S. CF centers participated in a survey investigating SRH. Results were summarized and compared to a nationally representative sample of young women aged 15-24 who participated in the U.S. National Survey of Family Growth (NSFG) using logistic regression to adjust for confounders. RESULTS: A total of 188 women with CF (19.7±2.7years) completed the survey; data were compared to 1997 NSFG respondents (19.6±0.10years). Women with CF had lower lifetime rates of ever obtaining a Pap smear or pelvic exam (26% vs. 57%; p<0.001) and similar rates of HPV vaccination (44% vs. 43%; p=0.64) compared to NSFG respondents. Thirty-seven percent of women with CF reported seeking contraception and <10% reported contraceptive counseling, STI testing/counseling, or pregnancy testing in their lifetime. In the prior 12months, 41% of NSFG respondents reported seeking contraception, 24% received contraceptive counseling, 22% STI testing/counseling, and 23% pregnancy testing. A minority of women with CF received or discussed SRH care in the CF setting, although 66% wanted to discuss SRH with their CF team. CONCLUSIONS: Young women with CF report low rates of SRH care utilization and desire SRH discussions in the CF setting. Interventions should target improved SRH care delivery and encourage patient-provider communication around SRH in the CF care setting.

Sexual and reproductive health behaviors and experiences reported by young women with cystic fibrosis.

BACKGROUND: The prevalence of general and disease-specific sexual and reproductive health (SRH) concerns is unknown in the United States (U.S.) female CF population. This study aimed to describe and compare the SRH experiences and behaviors of young women with CF with the general U.S. METHODS: Young women with CF ages 15-24years from five geographically diverse U.S. CF centers participated in a survey investigating SRH. Results were summarized and compared to the U.S. National Survey of Family Growth (NSFG) using logistic regression adjusting for confounders. FINDINGS: A total of 188 young women with CF (mean age 19.7±2.7years) completed the survey; data were compared to 1997 NSFG respondents (mean age 19.6±0.10years). Fifty-four percent of women with CF reported having had vaginal sex with a male partner compared to 66% of U.S. women (p=0.55). Women with CF were less likely to have ever used contraception (55% vs. 74%, p=0.0001) or have been tested for sexually transmitted infections in the past year (19% vs. 34%, p=0.001) compared to the general population. Two percent of women with CF reported having ever been pregnant compared to 24% of U.S. women (p<0.0001). One-third of young women with CF reported perceived pubertal delay, 16% urinary incontinence, 16% sexual dysfunction, and 49% yeast infections. INTERPRETATION: Young women with CF face significant SRH concerns and appear to be experiencing gaps in SRH care provision. Opportunities exist for intervention development around this aspect of comprehensive CF care. FUNDING: CF Foundation (KAZMER15A0); U.S. National Institutes of Health (UL1TR000005).