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.

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.

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.

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.

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).

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.

Provider Attitudes and Practices toward Sexual and Reproductive Health Care for Young Women with Cystic Fibrosis.

STUDY OBJECTIVE: To investigate the attitudes and practices of cystic fibrosis (CF) providers toward sexual and reproductive health (SRH) care in young women with CF. DESIGN, SETTING, PARTICIPANTS, AND INTERVENTIONS: Adult and pediatric US CF providers were sent an online survey exploring their attitudes toward SRH importance, SRH care practices, and barriers/facilitators to SRH care in adolescent and/or young adult women. Descriptive statistics and logistic regression were used to analyze results. MAIN OUTCOME MEASURES: Attitudes toward the importance of SRH care in patients with CF and self-report of practice patterns of SRH discussion. RESULTS: Respondents (n = 196) were 57% pediatric (111/196) and 24% adult physicians (48/196) and 19% nurse practitioners (NPs)/physician assistants (PAs) (37/196). Ninety-four percent of respondents believed SRH was important for female patients with CF (184/196). More than 75% believed SRH care should be standardized within the CF care model (147/196) and 41% believed the CF team should have the primary role in SRH discussion and care (80/196). For many CF-specific SRH topics, discrepancies emerged between how important respondents believed these were to address and how often they reported discussing these topics in practice. Significant differences in SRH attitudes and practices were present between adult and pediatric physicians. The most significant barriers to SRH care identified were lack of time (70%, 137/196) and the presence of family in clinic room (54%, 106/196). Potential facilitators included training materials for providers (68%, 133/196) and written (71%, 139/196) or online (76%, 149/196) educational resources for patients. CONCLUSION: CF providers perceive SRH topics as important to discuss, but identify barriers to routine discussion in current practice. Providers endorsed provider training and patient educational resources as means to improve SRH delivery.

Adolescents' Perceptions of Transition Importance, Readiness, and Likelihood of Future Success: The Role of Anticipatory Guidance.

Expert consensus supports anticipatory guidance around health care transition (HCT), but little is known about its impact on adolescents' perceptions of HCT. This study aimed to evaluate the frequency of HCT anticipatory guidance delivery and the effect it had on participants' perceptions of HCT. Adolescents (n = 209) with special health care needs were administered National Survey for Children with Special Health Care Needs transition assessment questions, then reported perceptions of transition importance, readiness, and likely future success. Over half of the participants reported no history of discussion about transition to an adult provider (64%) or insurance needs (67%); just under half (43%) had not discussed their changing health care needs. In participants reporting receipt of anticipatory guidance, ratings of transition readiness and future success were significantly higher than those who received no anticipatory guidance, supporting that HCT anticipatory guidance has a significantly positive impact on adolescents' perceptions of the HCT process.

Improving Sickle Cell Transitions of Care Through Health Information Technology.

INTRODUCTION: Transitions between inpatient and outpatient care and pediatric to adult care are associated with increased mortality for sickle cell disease (SCD) patients. As accurate and timely sharing of health information is essential during transitions, a health information technology (HIT)-enabled tool holds promise to improve care transitions. METHODS: From 2012 through 2014, the team conducted and analyzed data from an environmental scan, key informant interviews, and focus groups to inform the development of an HIT-enabled tool for SCD patients' use during care transitions. The scan included searches of peer-reviewed and gray literature to understand SCD patient needs, transition concerns, and best practices in mobile health applications, and searches of websites and online stores to identify existing transition tools and their features. Eleven focus groups consisted of four groups of SCD patients of varying ages (≥9 years); three groups of parents/caregivers of SCD patients; three groups of providers; and one with IT developers. RESULTS: In focus groups, patients and caregivers reported that the transition from home to the emergency department (ED) was the most challenging; the ED was also where transitions from pediatric to adult care usually occurred. Patients felt they were not taken seriously by unfamiliar ED providers, and their inability to convey their diagnosis, pain regimen, and detailed medical history while in significant pain hindered care. CONCLUSIONS: The environmental scan did not reveal an existing suitable transition tool, but patients, parents, providers, and IT experts saw the potential and appeal of creating a tool to meet ED health information needs to improve care transitions.

Provider and Patient Attitudes Regarding Sexual Health in Young Women With Cystic Fibrosis.

OBJECTIVE: To explore the attitudes, preferences, and experiences of patients with cystic fibrosis (CF) and CF providers toward sexual and reproductive health (SRH) care for young women with CF. METHODS: Young women with CF aged 18 to 30 years from a US CF care center and pediatric and adult CF program directors from a national sample participated in qualitative interviews investigating their experiences regarding SRH care and their attitudes and preferences toward SRH care provision in the CF setting. Interviews were audio-recorded, transcribed, and coded by using a thematic analysis approach. RESULTS: Twenty-two patient participants and 16 CF program directors were interviewed. Themes shared by both groups included the importance of SRH discussion in the CF care setting, patient and provider discomfort as a barrier to SRH care, and the need for SRH educational resources and provider training to improve SRH care. Providers highlighted the lack of standardization around SRH care in the current CF care model. Patients desired SRH educational resources coupled with early SRH discussions initiated by their CF provider. CONCLUSIONS: Both CF providers and patients agree that the CF provider has a fundamental role in providing CF-specific SRH care. Educational resources coupled with individualized SRH discussions may facilitate improved SRH care for young women with CF. Investigation into the implementation of SRH education and services into pediatric-onset chronic disease care models is needed.

Cystic fibrosis program directors' attitudes toward sexual and reproductive health in young women with CF.

INTRODUCTION: Advancements in therapy have led to dramatic increases in the life expectancy of patients with cystic fibrosis (CF). As survival improves, young women with CF will have expectations for their sexual and reproductive health (SRH) futures similar to their counterparts without CF. As they face unique CF-specific SRH concerns, they may rely on CF care providers for disease-specific SRH care provision. The purpose of this study was to investigate the attitudes of CF providers toward female SRH and perceived barriers in the current CF care model. MATERIALS AND METHODS: U.S. CF program directors (n = 16) participated in qualitative interviews investigating attitudes and barriers to female CF SRH care. Interviews were audio-recorded, transcribed, and coded using a thematic analysis approach. RESULTS: Participants (nine pediatric, five adult, and two combined) all agreed CF providers have a fundamental role in CF female SRH care. Most respondents named lack of time and patient and provider discomfort as significant barriers to effective SRH communication. Other reported barriers included: lack of training in SRH, family members in the room, low priority of SRH in setting of other CF issues, and lack of adequate rapport with patients. DISCUSSION: This is the first study to assess the attitudes and experiences of CF care providers toward SRH discussion and care among female CF patients. Despite their perceived fundamental role in CF female SRH care, CF providers face significant barriers. Investment in provider training is needed to better address the complex SRH needs of young female patients.

Trends in standard workup performed by pediatric subspecialists for the diagnosis of adolescent polycystic ovary syndrome.

OBJECTIVE: The purpose of this study is to identify trends in the clinical workup, diagnosis, and treatment of polycystic ovary syndrome by pediatric endocrinologists, pediatric gynecologists, and adolescent medicine specialists. DESIGN: Retrospective chart review. SETTING: Tertiary care medical center. PARTICIPANTS: Females aged 11-18 y who were evaluated for PCOS from June 2009 to October 2011 were included. Any patients with coexisting diagnoses of other primary etiology for amenorrhea were excluded. Patients were identified by ICD-9 codes for PCOS, hypersecretion of ovarian androgens, irregular menses, hirsutism, oligomenorrhea, or amenorrhea. 261 patients were included: 144 from endocrinology, 9 from gynecology, and 108 from adolescent pediatric practices. RESULTS: There were no significant differences in the androgen labs ordered by the subspecialties. Gynecologists ordered pelvic ultrasonography for 89% (n = 8) of patients, compared to 9% (n = 10) by adolescent medicine specialists and 24% (n = 34) by endocrinologists (P < .0001). Endocrinologists were most likely to treat patients who met diagnostic criteria for PCOS with metformin (58%, n = 66), compared to gynecologists (14%, n = 1) and adolescent medicine specialists (5%, n = 3) (P < .0001). Gynecologists (43%, n = 3) and adolescent medicine specialists (58%, n = 39) were more likely than endocrinologists (24%, n = 27) to treat patients with oral contraceptive pills (P < .0001). CONCLUSIONS: Inconsistent diagnosis and treatment strategies for young women with PCOS are evident among pediatric subspecialties, reflecting lack of standardized care for adolescents. Quantifying outcomes based on diagnostic and therapeutic approaches are important next steps.

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.

Stakeholder validation of a model of readiness for transition to adult care.

IMPORTANCE: That too few youth with special health care needs make the transition to adult-oriented health care successfully may be due, in part, to lack of readiness to transfer care. There is a lack of theoretical models to guide development and implementation of evidence-based guidelines, assessments, and interventions to improve transition readiness. OBJECTIVE: To further validate the Social-ecological Model of Adolescent and Young Adult Readiness to Transition (SMART) via feedback from stakeholders (patients, parents, and providers) from a medically diverse population in need of life-long follow-up care, survivors of childhood cancer. DESIGN: Mixed-methods participatory research design. SETTING: A large Mid-Atlantic children's hospital. PARTICIPANTS: Adolescent and young adult survivors of childhood cancer (n = 14), parents (n = 18), and pediatric providers (n = 10). MAIN EXPOSURES: Patients and parents participated in focus groups; providers participated in individual semi-structured interviews. MAIN OUTCOMES AND MEASURES: Validity of SMART was assessed 3 ways: (1) ratings on importance of SMART components for transition readiness using a 5-point scale (0-4; ratings >2 support validity), (2) nominations of 3 "most important" components, and (3) directed content analysis of focus group/interview transcripts. RESULTS: Qualitative data supported the validity of SMART, with minor modifications to definitions of components. Quantitative ratings met criteria for validity; stakeholders endorsed all components of SMART as important for transition. No additional SMART variables were suggested by stakeholders and the "most important" components varied by stakeholders, thus supporting the comprehensiveness of SMART and need to involve multiple perspectives. CONCLUSIONS AND RELEVANCE: SMART represents a comprehensive and empirically validated framework for transition research and program planning, supported by survivors of childhood cancer, parents, and pediatric providers. Future research should validate SMART among other populations with special health care needs.

Cystic fibrosis and transition to adult medical care.

Transition of young adults with cystic fibrosis (CF) from pediatric to adult medical care is an important priority, because many patients are living well into their fourth decade, and by 2010 more than half of all people living with CF will be older than 18 years. Transition to adulthood, a developmental process of skill-building in self-management supported by the health system, is important for the successful transfer to adult CF care. The US Cystic Fibrosis Foundation has been proactive in preparing for increasing numbers of young adults in need of specialized adult-oriented care by creating specialized clinical fellowships for physician providers and mandating establishment of adult CF programs. Despite these initiatives, how to best facilitate transition and to define and measure successful outcomes after transfer to adult care remains unclear. Many adults with CF continue to receive care in the pediatric setting, whereas others transfer before being developmentally prepared. In this state-of-the-art review we provide context for the scope of the challenges associated with designing and evaluating health care transition for adolescents and young adults with CF and implications for all youth with special health care needs.

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.