What Came First: Malnutrition or Severe Disease?

A 20-year-old female with depression presented to the emergency department with chronic weight loss, weakness, fatigue, hair loss, rash, palpitations, and 2 weeks of cough. Initial history revealed that she had disordered eating habits with dietary restriction, experienced a 50-pound unintentional weight loss over 2 years despite reported adherence to nutritional supplementation, and had a normal gastrointestinal workup. On examination, she was markedly cachectic with a BMI of 10.3kg/m2 and hypotensive (84/69 mmHg). Her cardiovascular examination revealed a regular rate and rhythm without a murmur. Her breath sounds were diminished in the upper lobes bilaterally. A skin examination showed diffuse hair loss, skin breakdown, and peeling with a tender, erythematous, papular rash over the bilateral ankles, and nonpitting edema. A chest radiograph showed a right upper lobe opacity and lucent lesions in the left proximal humerus. A focused assessment with sonography for trauma examination showed a large pericardial effusion. Chest computed tomography revealed a right upper lobe opacity with an associated cavitation. Though she began improving with rifampin, isoniazid, pyrazinamide, ethambutol, levofloxacin, azithromycin, and nutritional rehabilitation, her clinical course was complicated by an acute worsening nearly 1 month into her hospitalization with persistent high fevers, worsening cough, development of a murmur, and worsening consolidation on chest computed tomography. Adolescent Medicine, Infectious Diseases, Gastroenterology, and Allergy and Immunology were consulted to guide the diagnostic evaluation and management of this patient's complex clinical course.

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.

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.

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.

Effect of Hospitalization on Percent Median Body Mass Index at One Year, in Underweight Youth With Restrictive Eating Disorders.

PURPOSE: Data from low-weight patients with restrictive eating disorders (EDs) treated in outpatient adolescent medicine-based ED treatment programs were analyzed to determine whether there was an association between hospitalization and gain to at least 90% median body mass index (mBMI) at 1-year follow-up. METHODS: Data were retrospectively collected for 322 low-weight (<85% mBMI at intake) patients aged 9-21 years, who presented with restrictive EDs to 14 adolescent medicine-based ED programs in 2010. Positive outcome was defined as being at least 90% mBMI (%mBMI = patient's body mass index/mBMI for age × 100) at 1-year follow-up. Association between treatment at a higher level of care and gain to at least 90% mBMI was analyzed for 140 patients who were <85% mBMI at the time of presentation, had not been previously hospitalized, and had 1-year follow-up data available. RESULTS: For patients presenting at <85% mBMI, those who were hospitalized in the year following intake had 4.0 (95% confidence interval: 1.6-10.1) times the odds of gain to at least 90% mBMI, compared with patients who were not hospitalized, when controlling for baseline %mBMI. CONCLUSION: In this national cohort of patients with restrictive EDs presenting to adolescent medicine-based ED programs at <85% mBMI, those who were hospitalized had greater odds of being at least 90% mBMI at 1-year follow-up.

History of Overweight/Obesity as Predictor of Care Received at 1-year Follow-Up in Adolescents With Anorexia Nervosa or Atypical Anorexia Nervosa.

PURPOSE: Previous research has indicated that patients with anorexia nervosa (AN) or atypical AN with premorbid history of overweight/obesity have greater weight loss and longer illness duration than patients with no such history. However, little is known about the association of premorbid overweight/obesity and receiving inpatient medical care during treatment for an eating disorder. METHODS: Using logistic regression, we sought to determine if history of overweight/obesity was associated with receiving inpatient medical care in a sample of 522 patients (mean age 15.5 years, 88% female) with AN/atypical AN. RESULTS: Binary results demonstrated greater percent weight loss (27.4% vs. 16.2%) and higher percent median body mass index (%mBMI, 99.8% vs. 85.2%) at presentation in those with a history of overweight/obesity (p < .001) but no difference in duration of illness (p = .09). In models adjusted for demographics and percent weight loss, history of overweight/obesity was associated with lower odds of receiving inpatient medical care (odds ratio .60 [95% confidence interval: .45-.80]) at 1-year follow-up. However, these associations were no longer significant after adjusting for %mBMI. Mediation results suggest that %mBMI fully mediates the relationship between history of overweight/obesity and inpatient medical care, in that those with a history of overweight/obesity are less likely to receive care due to presenting at a higher weight. CONCLUSIONS: Our findings suggest that, despite greater degree of weight loss and no difference in duration of illness, participants with a history of overweight/obesity are less likely to receive inpatient medical care.

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.

Use of Psychopharmacologic Medications in Adolescents With Restrictive Eating Disorders: Analysis of Data From the National Eating Disorder Quality Improvement Collaborative.

PURPOSE: Psychopharmacologic medications are often prescribed to patients with restrictive eating disorders (EDs), and little is known about the frequency of use in adolescents. We examined the use of psychopharmacologic medications in adolescents referred for treatment of restrictive ED, potential factors associated with their use, and reported psychiatric comorbidities. METHODS: Retrospective data from the initial and 1-year visits were collected for patients referred for evaluation of restrictive ED at 12 adolescent-based ED programs during 2010 (Group 1), including diagnosis, demographic information, body mass index, prior treatment modalities, and psychopharmacologic medications. Additional data regarding patients' comorbid psychiatric conditions and classes of psychopharmacologic medications were obtained from six sites (Group 2). RESULTS: Overall, 635 patients met inclusion criteria and 359 had 1-year follow-up (Group 1). At intake, 20.4% of Group 1 was taking psychopharmacologic medication and 58.7% at 1 year (p ≤ .0001). White, non-Hispanic race (p = .020), and prior higher level of care (p < .0001) were positively associated with medication use at 1 year. Among Group 2 (n = 256), serotonin reuptake inhibitors/serotonin-norepinephrine reuptake inhibitors use was most common, and 62.6% had a reported psychiatric comorbidity. Presence of any psychiatric comorbidity was highly associated with medication use; odds ratio, 10.0 (5.6, 18.0). CONCLUSIONS: Adolescents with restrictive ED treated at referral centers have high rates of reported psychopharmacologic medication use and psychiatric comorbidity. As more than half of this referral population were reported to be taking medication, continued investigation is warranted to ensure the desired outcomes of the medications are being met.

Evaluation of the professional process portfolio: an innovative tool to help develop and demonstrate leadership competency.

The professional process portfolio (PPP) was adopted by the Maternal Child and Health Bureau (MCHB) as an 'innovation' in best practice for all Leadership in Education and Adolescent Health (LEAH) Training Programs; however it had not been formally evaluated. Thus the objective was to evaluate the utility of the PPP for graduates of the LEAH training program in terms of (1) how alumni have used, adapted, and applied it since completing fellowship, (2) what fellows learned or gained through completing it, and (3) how it can be improved for continued use in training programs. Graduates from six disciplines were asked via telephone or email to participate in a survey regarding their experience with the PPP. Descriptive statistics were generated for demographic characteristics and closed-choice questions. Responses to open-ended questions were analyzed by a team of faculty using framework analysis. Sixty-one graduates completed surveys. The majority (85%) found the PPP useful and utilized it post-graduation for multiple purposes in professional development: interviewing, training, and referencing previous work. Graduates recommended that the PPP be improved by making it electronic, discipline-specific, and providing earlier and more frequent instruction from faculty on expectations of creating it. Four themes emerged from the qualitative data analysis: accomplishment, experiential learning, skills and accountability, and a best practice of learning. The PPP was an effective personal learning tool for the majority of graduates and enhanced graduates' experiences. We highlight the ways that the PPP may facilitate the development of learning experiences associated with MCH leadership competence.