An Intervention to Promote Healthcare Transition Planning Among Pediatric Residents.

PURPOSE: Poorly planned healthcare transition (HCT) from pediatric to adult-based care for adolescents and young adults with special healthcare needs (AYASHCN) is associated with increased morbidity and mortality. Most pediatricians and pediatric residents are not trained to assist AYASHCN with HCT planning. An electronic medical record-based Transition Planning Tool (TPT) was developed at a large children's hospital to guide provider-patient interactions around HCT planning. The purpose of this study was to evaluate an educational intervention to promote residents' use of the TPT. METHODS: A multimodal (TPT training, demonstrations, use prompts, and case discussions) curriculum promoting the use of the TPT was developed and implemented within a one-month Adolescent Medicine Rotation. A prospective, nonrandomized, quasi-experimental design with Intervention and Historical Control groups was used. Forty-two residents received the intervention. Twenty-three Historical Control residents received minimal formal training in the TPT. Intervention Group residents completed prerotation/postrotation assessments measuring perceived importance of/comfort with HCT planning and self-reported HCT planning activities. TPT use was compared between the two groups. RESULTS: Compared to the Historical Control Group, Intervention Group residents were significantly more likely to use the TPT (98% vs. 37%, p < .001) and had a higher mean number of uses (5.5 ± 3.0 vs. 2.6 ± 1.2, p < .001). Residents reported greater perceived importance of (p < .001) and engagement in (p < .001) transition planning activities after completing the intervention. Nearly all (91%) reported that their training increased their comfort in HCT planning. CONCLUSIONS: A targeted intervention improved pediatric residents' use of the TPT and HCT planning activities.

The roles of quality of life and family and peer support in feelings about transition to adult care in adolescents with gastroenterology, renal, and rheumatology diseases.

PURPOSE: Transition to adult healthcare is a critical time in the lives of adolescents with chronic medical conditions, with clear impacts on health outcomes. Little is known about factors that impact feelings about healthcare transition, including HRQOL, family and peer support, and utilization of a framework such as the SMART Model can guide exploration of these factors. The goal of this study is to examine how HRQOL (i.e., functional impact of disease) and family and peer support may impact adolescents' feelings about healthcare transition. DESIGN AND METHODS: 135 adolescents (17-23 years) with chronic gastroenterology, renal, or rheumatology disease completed four questionnaires as part of a larger study examining health, relationships, and healthcare transition. Questions assessed current HRQOL (i.e., number of days health was "not good"), peer and family support, and feelings about transition. Data were analyzed using SPSSv25 and linear regressions were performed. RESULTS: Lower HRQOL (ß = 0.283, p < .01) and less peer support (ß = -0.198, p < .05) were associated with worse feelings about transition (R2 = 0.203, p < .001). Family support was significantly correlated at the bivariate level. There were no differences by type of disease, race/ethnicity, or gender that impacted study findings. CONCLUSION(S): Results are concerning as healthcare transition is a milestone for every patient. Lower HRQOL (i.e., greater functional impact of disease) and less peer support were associated with worse feelings about transition. PRACTICE IMPLICATIONS: This study highlights potential targets for intervention such as improving HRQOL (e.g., acceptance and commitment therapy) and increasing peer support (e.g., social skills training, family facilitation) to improve transition to adult care for pediatric patients with chronic diseases.

The Utility of Self-Determination Theory in Predicting Transition Readiness in Adolescents With Special Healthcare Needs.

PURPOSE: Adolescents and young adults with chronic health conditions must learn skills to successfully manage their health as they prepare to transition into adult-based care. Self-determination theory (SDT), an empirically based theory of human motivation, posits that competence (feeling effective), autonomy (volition to perform behaviors), and relatedness (support for autonomy from others) influence behavioral change. This study evaluates the utility of SDT constructs in predicting transition readiness among adolescents and young adults recruited into an intervention to promote successful healthcare transition. METHODS: Baseline assessments were completed by 137 patients aged 17-23 years recruited from pediatric renal, gastroenterology, or rheumatology clinical services. Surveys measured transition readiness (Transition Readiness Assessment Questionnaire) as well as SDT constructs, including competence (Patient Activation Measure); provider relatedness and parent autonomy support (Health Care Climate Questionnaire); and health care-related autonomy (Treatment Self-Regulation Questionnaire). Relationships between SDT constructs and transition readiness were evaluated using linear regression. RESULTS: Between 44 and 48 participants were recruited from each service. Bivariate correlation coefficients between transition readiness and SDT constructs were competence (r = .44), autonomous autonomy (r = .34), controlled autonomy (r = .27), provider relatedness (r = .46), and parental autonomy support (r = .35) (p < .01). Age positively correlated with transition readiness (r = .47, p < .001). After controlling for age, gender, and clinical service, competence (p < .001) and provider relatedness (p = .008) successfully predicted transition readiness (R2 = .423; F change; p < .001). CONCLUSIONS: Findings from this cross-sectional study support the utility of SDT constructs in promoting transition readiness among adolescents and young adults with chronic conditions, underscoring the importance of building competence and provider support for autonomy during this critical period.

The Development of Health Self-Management Among Adolescents With Chronic Conditions: An Application of Self-Determination Theory.

PURPOSE: The purpose of the study was to better understand the progressive development of health self-management among adolescents and emerging adults (AEAs) with chronic medical conditions in order to identify opportunities to prepare AEA for transition to adult-based care. METHODS: Twenty-three AEA aged 17-20 years with renal, inflammatory bowel, or rheumatologic diseases, and their parents, completed individual semistructured interviews describing each AEA's health self-management. Self-Determination Theory was used to frame interview questions, including the constructs of competence, autonomy, and autonomy support. Transcripts were analyzed using directed content analysis. RESULTS: Four themes emerged: Development of Competence in Self-Management; Autonomy: Motivations to Self-Manage; Ways Important Others Support or Hinder Independence; and Normal Adolescent Development. AEA's competency and autonomy increased as they progressed from lack of knowledge about self-management to having knowledge without doing tasks, and, ultimately, to independent completion of tasks. Motivations to self-manage included avoiding sickness/weakness and wanting to engage in activities. Parents and providers supported AEA's autonomy through teaching and transferring responsibility. Parental fear/lack of trust in AEA's ability to self-manage hindered development of AEA's autonomy, producing anxiety. Normal adolescent development impacted timing of self-management task mastery. CONCLUSIONS: As AEA gain competence in increasingly complex self-management tasks, they assume greater responsibility for managing their health. Competence and autonomy are facilitated by a feedback loop: AEA successful self-management increased parent trust, enabling the parent to transfer responsibility for more complex tasks. Conversely, parents' fear of the AEA doing wrong hinders transfer of responsibility, limiting competence and autonomy. Health-care providers play an important role in fostering autonomy.

In-Depth Interviews to Assess the Relevancy and Fit of a Peer-Mentored Intervention for Transition-Age Youth with Chronic Medical Conditions.

STUDY PURPOSE: The purpose of this study is to evaluate the relevancy and fit of a proposed group-based, peer-mentored intervention, based on the principles of Self-Determination Theory (SDT), to facilitate the development of health self-management skills needed to transition from pediatric to adult-based healthcare. DESIGN AND METHODS: Individual in-depth interviews with 28 transition-age youth (TAY) ages 17-22 and 24 caregivers (parents) from Gastroenterology, Renal and Rheumatology clinical services assessed interests in and preferred content, timing of and format for an intervention to help youth build self-management skills. Descriptive statistics were used for short answer questions and rating scales. Thematic analysis was used to analyze transcripts. RESULTS: >90% of TAY and all caregivers thought the proposed group-based transition skills-building intervention was a good idea. TAY expressed wanting someone with lived experience to lead it and a desire to meet other youth with chronic conditions. All caregivers would want their TAY to participate if given the opportunity. Both TAY and caregivers voiced the importance of mental health topics as many TAY experienced anxiety or depression over managing their illness. Nearly 50% of TAY and caregivers thought parents should attend some or all group sessions, though TAY and caregivers within the same family did not always agree. CONCLUSIONS: Findings establish the relevancy and fit of a peer-mentored intervention focused on skill development to successfully transition to adult healthcare. PRACTICE IMPLICATIONS: The group intervention designed using a SDT framework may be particularly relevant as autonomy, competence, and relatedness undergo major developmental changes during adolescence.

Pregnant Adolescents As Perpetrators and Victims of Intimate Partner Violence.

The role of pregnant adolescents as perpetrators of intimate partner violence (IPV) is not well understood. Socioecological factors associated with IPV (physical assault and injury, and psychological aggression) perpetrated by pregnant adolescents and the association between IPV and attitudes toward the use of physical punishment to discipline children were examined among 246 pregnant adolescents. Pregnant adolescents were more likely to report perpetrating both physical assault (24%) and psychological aggression (52.7%) than being the recipient (12.2% and 38.6%, respectively) and having been physically injured (7%) than inflicting injury (4.1%). Risk factors for perpetrating physical assault included prior assault by partner, being African American, exposure to community violence, being in trouble with the police, and multiple lifetime drug use. IPV perpetrators had more favorable attitudes toward the use of physical punishment. Interventions should address IPV and parenting attitudes in young couples to maximize the health and safety of both mother and unborn child.

Development of a Group-Based, Peer-Mentor Intervention to Promote Disease Self-Management Skills Among Youth With Chronic Medical Conditions.

STUDY PURPOSE: The purpose of this paper is to describe the development of a group-based peer-mentor intervention to enhance knowledge/skills of transition-age youth (TAY) from three clinical services (gastroenterology, renal or rheumatology) at a large children's hospital in order to facilitate transition from pediatric to adult healthcare. DESIGN AND METHODS: Using a multi-modal, iterative approach, the structure/content of the intervention was based on peer-reviewed literature; surveys/interviews conducted with TAY, families, and adult and pediatric providers; principles of Self-Determination Theory and motivational interviewing; and guided by a logic model. A TAY community advisory board helped interpret the information and develop the intervention. RESULTS: The resulting intervention has eight sessions led by peer mentors (young adults who have successfully transitioned to adult healthcare, who are trained to use a motivational interviewing approach) covering topics such as goal setting; understanding my diagnosis; organizing personal, health & insurance information; characteristics of a good provider; filling/refilling prescriptions; and mental well-being. The TAY community advisory board recommended holding two sessions on each of four Saturdays, using interactive group activities to make it fun, and creating a written complimentary manual for caregivers. CONCLUSIONS: A TAY community advisory board was instrumental in developing an innovative peer-mentor intervention to promote the development of specific skills TAY require to manage their disease within adult healthcare. PRACTICE IMPLICATIONS: Although the intervention was developed with extensive stakeholder input, a next step is to evaluate the intervention with respect to how well it fits the broader membership in the target population.

Rate of weight gain as a predictor of readmission in adolescents with eating disorders.

BACKGROUND: Readmission after hospital discharge is common in adolescents with eating disorders. Studies on the association between rapidity of weight gain and readmission are inconsistent. With an emphasis on more rapid weight gain during hospitalization, the effect of this strategy on readmission rates warrants further investigation. OBJECTIVE: This project explored the relationship between rate of weight gain during hospitalization and medically necessitated readmissions. SUBJECTS: Eighty-two patients who: were admitted due to an eating disorder during a 5-year period; achieved weight restoration to ≥84% of ideal body weight (IBW); had a follow-up visit with the adolescent medicine service after discharge; and, had information available on rate of weight gain. METHODS: Data were extracted from medical records. Multiple logistic regression was used to analyze the effect of rate of weight gain on readmission. The effect of a comorbid psychiatric diagnosis was tested for an interaction. RESULTS: Of patients 20.7% required readmission. The median rate of weight gain was 118.6 g/day [interquartile range (IQR) = 91.8-150.8]. There was a 1.8 times [95% confidence interval (CI) = 0.9-3.6, p = 0.087] greater odds of readmission with each increase in weight gain quartile after adjusting for potential confounders. Patients in the lowest rate of weight gain quartile and no psychiatric co-morbidity had a significantly lower predicted probability of readmission (25.1%) compared to those with a psychiatric comorbidity and in the highest quartile of rate of weight gain (48.4%). CONCLUSION: Patients with eating disorders who have rapid inpatient weight gain and psychiatric co-morbidities may be at increased risk for readmission.

Feasibility and acceptability of the Bod Pod procedure and changes in body composition from admission to discharge in adolescents hospitalized with eating disorders.

The feasibility and acceptability of using the Bod Pod procedure to measure changes in body composition in 30 adolescent females admitted to an inpatient eating disorder unit was evaluated using written surveys, Bod Pod measurements obtained at admission and discharge, and medical records review. Participants rated the Bod Pod test as acceptable (100%; 30/30), comfortable (93%, 28/30), and they were willing to repeat the procedure (97%, 29/30). Ten participants did not complete the final Bod Pod: eight were discharged before a second measure could be obtained, one refused the test, and one left against medical advice. Three participants had undetectable readings at admission. Paired t-tests (n = 17) revealed a significant (p < 0.001) mean increase in fat mass (3.7 ± 2 kg), body fat percentage (6.6 ± 3.8%), and lean mass (1.4 ± 1.2 kg) from admission to discharge. The Bod Pod is a feasible and acceptable procedure to measure changes in body composition in adolescent females hospitalized with an eating disorder.

Identifying Opportunities to Provide Family-centered Care for Families With Children With Type 1 Spinal Muscular Atrophy.

STUDY PURPOSE: The purpose of this qualitative study was to understand, from the parent perspective, the experience of the family whose child has Type 1 spinal muscular atrophy (Type 1 SMA), in the emergency center, hospital, and clinical care settings to identify opportunities for improved family-centered care (FCC). DESIGN AND METHODS: This study used a qualitative descriptive design with individual or small group interviews guided by a semi-structured questionnaire. Reviewers used framework analysis to identify gaps in the provision of FCC and opportunities for improvement with respect to services health professionals may provide families of children with Type 1 SMA. RESULTS: Nineteen families with 22 children with Type 1 SMA participated. Results are organized according to eight basic tenets of FCC. Family-to-family interactions strongly impacted participants' decision-making and perceived level of support. Participants valued strong family/provider partnerships, feeling heard and respected by their providers, and receiving complete education regarding disease trajectory. CONCLUSIONS: Our analyses revealed both successful application of FCC and gaps in care where FCC could have been used to benefit families who have children with Type 1 SMA. As a pediatric chronic illness affects the whole family, FCC is important in maintaining the providers' focus on the family during the child's care. PRACTICE IMPLICATIONS: There are opportunities for nursing, social work, care managers and others to engage as care coordinators to explain the family's goals and values to the medical team. Care coordinators help ensure understanding between families and providers, empowering the family to articulate their hopes and concerns.

Functional classification of heart failure before and after implementing a healthcare transition program for youth and young adults transferring from a pediatric to an adult congenital heart disease clinics.

OBJECTIVE: To describe changes in functional status between the last pediatric and first adult congenital heart disease (CHD) clinic visits in patients with moderate to severe CHD after implementing a healthcare transition (HCT) planning program. DESIGN: Quasi-experimental design. Patients were followed prospectively following the implementation of the intervention; Control patients transitioned from the Pediatric CHD Clinic into Adult CHD Clinic before the intervention. SETTING: Texas Children's Hospital (TCH). PATIENTS: Sixteen to 25-year-olds, cognitively normal, English speaking patients with moderate to severe CHD who transitioned from the Pediatric to the Adult CHD clinic. INTERVENTIONS: An EMR-based transition planning tool (TPT) was introduced into the Pediatric CHD Clinic. Two nurses used the TPT with eligible patients. Independent of the intervention, two medicine-pediatric CHD physicians and one nurse practitioner were added to the ACHD Clinic to address growing capacity needs. OUTCOME MEASURES: The New York Heart Association Functional Classification of Heart Failure (NYHAFS). RESULTS: Control patients waited 26 ± 19.2 months after their last pediatric clinic visit for their first adult visit. Intervention patients waited 13 ± 8.3 months (P = .019). Control and Intervention patients experienced a lapse in care greater than two (50% vs 13%, P = .017) and three (30% vs 0%, P = .011) years, respectively. The difference between the recommended number of months for follow-up and the first adult appointment (15.1 ± 17.3 Control and 4.4 ± 6.1 Intervention months) was significant (P = .025). NYHAFS deteriorated between the last Pediatric visit and the first ACHD visit for seven (23%) Control patients and no Intervention patients (P = .042). Four of seven Control patients whose NYHAFS declined had a lapse of care of more than two years. CONCLUSIONS: There is a need for improved HCT planning for patients with moderate to severe CHD, otherwise, lapses of care and adverse outcomes can ensue.

Diagnostic Evaluation, Comorbidity Screening, and Treatment of Polycystic Ovary Syndrome in Adolescents in 3 Specialty Clinics.

STUDY OBJECTIVE: A polycystic ovary syndrome (PCOS) diagnosis in adolescence can have significant long-term health implications. The criteria for its diagnosis in adolescents have been subject to much debate. In this study we aimed to characterize the variability in diagnosis and management among different pediatric specialties. DESIGN, SETTING, PARTICIPANTS, AND INTERVENTIONS: This was a retrospective review of electronic medical records of female patients (11-21 years old) who presented to 3 specialties (adolescent medicine [ADO], pediatric endocrinology [ENDO], and gynecology [GYN]), with a postvisit diagnosis of PCOS, menstrual disorders, or hirsutism, at a large tertiary care center, from November 1, 2011 to October 31, 2012. Demographic, clinical, laboratory, and treatment data were abstracted. MAIN OUTCOME MEASURES: Testing for diagnosis of PCOS and its comorbidities, and treatment strategies in the 3 pediatric specialties. RESULTS: One hundred forty-one patients (50 ADO, 48 ENDO, and 43 GYN) were eligible. Testing for hyperandrogenemia (17-hydroxy-progesterone, dehydroepiandrosterone, estradiol), thyroxine, and use of pelvic ultrasound differed among specialties. Providers failed to document weight concerns in 28.3% (29 of 101) of overweight or obese patients. Patients seen by ENDO were most likely, and GYN least likely, to be identified as having elevated weight, and to be tested for glucose abnormalities, dyslipidemia, and liver disease. ENDO providers prescribed metformin more often and hormonal therapy less often than ADO and GYN. CONCLUSION: There is considerable variability across pediatric specialties in the evaluation of PCOS, with significant underassessment of comorbidities. Use of unified guidelines, including for the evaluation of comorbidities, would improve evidence-based management of adolescent PCOS.

The Experience of Families With Children With Spinal Muscular Atrophy Type I Across Health Care Systems.

Spinal muscular atrophy type I is a genetic disease characterized by degeneration of spinal cord motor neurons resulting in weakness, technology dependence and early demise. While the newly approved treatment nusinersen may alter the morbidity/mortality of this disease there continues to be complex treatment challenges to consider. The aim of this qualitative study was to understand from the parent's perspective, experiences of the family and child in the emergency center, hospital, and clinical care settings to identify gaps in care. Nineteen families interviewed had 22 children with spinal muscular atrophy I (11 deceased, 11 living). Three overarching themes emerged from parent interviews describing a range of experiences surrounding diagnosis, informed medical decision making and acute care practice. Identified quality improvements include development of a diagnostic screening tool, a medical decision tool, and emergency center informational template individualized to the child and providing an overview of spinal muscular atrophy I.

Choice of Postpartum Contraception: Factors Predisposing Pregnant Adolescents to Choose Less Effective Methods Over Long-Acting Reversible Contraception.

PURPOSE: The purposes were to determine contraceptive methods pregnant adolescents intend to use postpartum and to understand factors that predispose intention to use less effective birth control than long-acting reversible contraception (LARC). METHODS: Participants were 247 pregnant minority adolescents in a prenatal program. Intention was assessed by asking "Which of the following methods of preventing pregnancy do you intend to use after you deliver?" Multinomial logistic regression analysis was used to determine factors associated with intent to use nonhormonal (NH) contraception (male/female condoms, abstinence, withdrawal and no method) or short-/medium-acting hormonal (SMH) contraception (birth control pill, patch, vaginal ring, injectable medroxyprogesterone acetate) compared with LARC (implant and intrauterine device) postpartum. RESULTS: Twenty-three percent intended to use LARC, 53% an SMH method, and 24% an NH method. Participants who intended to use NH or SMH contraceptive methods over LARC were significantly more likely to believe that LARC is not effective at preventing pregnancy, to report that they do not make decisions to help reach their goals and that partners are not important when making contraceptive decisions. Other important factors were having a mother who was aged >19 years at first birth and had not graduated from high school, not having experienced a prior pregnancy or talked with parents about birth control options, and the perception of having limited financial resources. CONCLUSIONS: Distinct profiles of factors associated with intending to use NH or SMH contraceptive methods over LARC postpartum were identified and may inform future interventions to promote the use of LARC to prevent repeat pregnancy.

Lessons learned in building a hospital-wide transition program from pediatric to adult-based health care for youth with special health care needs (YSHCN).

Advancements in medicine have increased the likelihood that children with chronic illnesses will survive childhood. The success in treatment for their conditions has not been matched by methods to effectively facilitate their transition to adult care. This short report describes lessons learned in building a hospital-wide health care transition (HCT) planning infrastructure that could help patients transition from pediatric to adult-based care regardless of disease/disability. A solid foundation on which to build a hospital-based HCT planning program includes the following: focusing on structure and processes needed to facilitate medical transition; conducting a baseline assessment of current transition policy/practice; building an understanding of the complexity and necessity of transition planning; identifying advocates for transition planning and adult providers who will accept youth with chronic medical conditions; and establishing methods to evaluate transition program building activities. The implementation of any HCT program will depend on creating a culture that expects successful HCT to be the culmination of successful pediatric care. Hospital support (resources, staff training and an expanded infrastructure into which the program can fit) is necessary for a sustainable HCT planning program.

Current Issues in Transitioning from Pediatric to Adult-Based Care for Youth with Chronic Health Care Needs.

For over 25 years, with medical advances increasing the lifespan of YYASHCN, we have been aware of the need to improve health care transition to adult-based care services. Barriers to health care transition have been identified and in a number of settings, recognition of the problem and preliminary success has been achieved for pilot programs. Evidence-based solutions to improve health care transition for YYASHCN are needed. There are barriers at the patient, family, pediatric, and adult provider, and insurance system levels that must be overcome.

Integrating an EMR-based Transition Planning Tool for CYSHCN at a Children's Hospital: A Quality Improvement Project to Increase Provider Use and Satisfaction.

An electronic medical record (EMR)-based transition planning tool (TPT) designed to facilitate transition from pediatric to adult-based health care for youth (16-25 years) with special health care needs was introduced at a large children's hospital. Activities to increase provider use were implemented in five plan-do-study-act cycles. Overall, 22 of 25 (88%) consenting providers in four pediatric subspecialty services used the TPT during 303 patient encounters, with nurses and case-managers the top users and physicians the least likely users. Use was highest with intensive technical assistance and following the introduction of an upgraded tool. Provider satisfaction with the TPT and self-reported transition planning activities notably increased across the PDSA cycles.

A Socioecological Framework to Assessing Depression Among Pregnant Teens.

To examine individual, interpersonal, family, and community correlates associated with moderate-to-severe depressive symptoms among pregnant adolescents. A total of 249 primarily African American and Hispanic pregnant adolescents ages 15-18 years were recruited into either an intervention group utilizing Centering Pregnancy prenatal care and case management, or to a comparison group receiving case management only. Moderate-to-severe depressive symptoms were defined as a score ≥16 on the Center for Epidemiologic Studies Depression Scale (CES-D). Intervention and comparison groups did not significantly differ on demographic characteristics or depression scores at baseline. A total of 115 (46.1 %) participants met criteria for moderate-to-severe depressive symptoms at entry into the program. Pregnant adolescents who were moderately-to-severely depressed were more likely to be African American, to have reported limited contact with the father of the baby, and to have experienced prior verbal, physical or sexual abuse. Depressed adolescents also experienced high levels of family criticism, low levels of general support, and exposure to community violence. A significant number of pregnant adolescents were affected by depression and other challenges that could affect their health. Comprehensive interventions addressing these challenges and incorporating partners and families are needed.