Care coordination in pediatric health care settings: the critical role of social work.

Background: Care coordination (CC) is integral to improving health care quality. Research on CC by health care social workers (HSWs) in pediatric health care settings is limited. This paper aims to operationalize and quantify CC functions fulfilled by HSWs in one large urban pediatric hospital. Methods: Twenty-three discrete CC tasks across four categories of assessment, meetings, consultations, and facilitation were identified and operationalized by an HSW CC committee through a consensus-driven decision-making process. Over three workdays, 22 HSWs from 18 unique health care clinic settings recorded total time spent daily on each CC activity. Results: Participants spent an average of 78.3% of a typical workday on CC activities. Regardless of setting, participants completed tasks across all general activity categories of assessment, meetings, consults, and facilitation. The most time-consuming CC tasks included biopsychosocial assessment, medical team consultations, multidisciplinary care plan facilitation, and family meetings. Tasks related to child protection were among the least frequently completed. Conclusion: CC is a cornerstone of HSW service provision in pediatric health care settings. HSWs can be vital collaborators in developing innovative transdisciplinary CC models.

Creation of Experience-based Celiac Benchmarks: The First Step in Pretransition Self-management Assessment.

OBJECTIVES: Transition planning for children with chronic disease includes the development of independence in many self-management tasks. Conditions that depend on diet have distinct skill sets not well assessed by the traditional transition-readiness tools. There has been literature that describes age-appropriate skill acquisition for diabetes and food allergy patients. There are, however, no age-appropriate benchmarks established for celiac disease (CD). METHODS: CD experts (including physician, nurse, dietician, social worker, patient, and parent) created a list of celiac-related tasks, which formed the basis of the survey. Patients with CD, and their parents, were recruited from outpatient celiac clinic and support groups, and invited to report the age each task was mastered. RESULTS: Respondents included 204 patients and 155 parents. Mean age was 12 years (standard deviation 4.6) with average of 4 years since diagnosis. The earliest tasks were mastered by a median age of 8 years, such as recognizing GF as gluten-free, eating safely in a shared space and recognizing basic unsafe foods. Describing the effects of eating gluten or explaining CD to a friend or stranger occurred around age 10. Asking about gluten-free preparation in a restaurant, and identifying gluten-free medications or vitamins was mastered around age 12, whereas tasks involved with safe domestic travel or assessing risk in a job environment occurred between 14 and 16. The interquartile range was about 4 years for each question. No significant difference seen between patient and parent reports. CONCLUSIONS: This novel patient-centered celiac skill list may improve anticipatory guidance and accelerate self-management skills.

Social workers as care coordinators: Leaders in ensuring effective, compassionate care.

The concept of care coordination is at the forefront of national conversations in the context of health care reform. As pediatric social workers, we are interested in how care coordination benefits our patients, and which disciplines are providing coordination services. We have determined that significant overlap exists between the work social workers are already doing in inpatient and outpatient medical settings and the literature's definition of care coordination activities. This article outlines our process of literature review and creation of a working definition of care coordination, and frames the concepts we believe remain central to the process of care coordination.

Provider awareness alone does not improve transition readiness skills in adolescent patients with inflammatory bowel disease.

OBJECTIVE: Adolescent patients with chronic health conditions must gradually assume responsibility for their health. Self-management skills are needed for a successful transfer from adolescent to adult health care, but the development of these skills could be resource intensive. Pediatric providers are already instrumental in teaching patients about their health and may improve these skills. The aim of the study was to evaluate whether informal education of pediatric providers regarding transition improves inflammatory bowel disease (IBD) patient self-management skills. METHODS: Consecutive patients with IBD older than 10 years who presented to the outpatient setting were administered a survey regarding self-management behaviors in 2008 and 2011. During this time, several conferences on transition were presented to the providers. RESULTS: In 2008, 294 patients completed the survey (82%) compared with 121 patients (89%) in 2011. The patient groups were comparable with respect to sex (boys 50% vs 42%), mean age (16.7 vs 16.2 years), and type of IBD (Crohn 68% vs 66%). The 13- to 15-year-olds reported calling in refills (11%, 8%, respectively), scheduling clinic appointment (0, 1%), preparing questions (13%, 5%), and taking the main role in talking during clinic visits (15%, 24%). The 16- to 18-year-olds reported calling in refills (13%, 27%), scheduling clinic appointments (9%, 6%), preparing questions (9%, 16%), and taking the main role in talking in clinic visits (36%, 45%). Responsibility for behaviors gradually increases with age, but did not differ significantly between 2008 and 2011. CONCLUSIONS: Increasing awareness around transition readiness for pediatric providers had an insignificant effect on the self-management skills of patients with IBD. A more formal or structured approach is likely required to improve transition skills in adolescent patients.

IBD Camp Oasis: A look at Participants' Social-Emotional Well-Being and Protective Factors During Camp and Beyond.

Background: Camp Oasis is an annual week-long camp serving children with inflammatory bowel disease (IBD) and hosted by the Crohn's and Colitis Foundation. Youth with IBD are at increased risk for mental health challenges, with Camp Oasis potentially mitigating these risks. The aim of this study is to measure change in and predictors of social-emotional well-being and protective factors of self-worth as a result of attending Camp Oasis. Methods: Between 2012 and 2019, a voluntary survey was administered to participants and their caregivers to reflect on their perceptions of social/emotional well-being and protective factors related to chronic disease. T-tests compared change in participants' and caregivers' perceptions before and after camp; path analyses examined the key predictors of social-emotional well-being. Results: A total of 6011 online surveys were analyzed. Participants and caregivers reported consistently positive perceptions of participants' experiences during and after camp. Significant improvements in confidence, independence, activity, comfort around others, being more open about disease, and taking medication as expected were observed. Being new to Camp Oasis was one of the strongest predictors of both disease-related self-efficacy and social connections after camp. Conclusions: The uniformly high rates of participants' perceptions during camp suggest camp is a life-changing experience for youth with IBD, reduces disease-related stigma, and enhances confidence and social skills. Participants' positive experiences appear to foster notable benefits after camp in terms of openness, their sense of belonging, connections, and confidence.

Social workers as transition brokers: facilitating the transition from pediatric to adult medical care.

Transition from pediatric to adult medical care and the significant psychosocial considerations impacting this developmental process are a primary focus in health care today. Social workers are often the informal brokers of this complex and nuanced process and are uniquely trained to complete biopsychosocial assessments to understand the needs of patients and families and address psychosocial factors. Their extensive knowledge of resources and systems, along with their sophisticated understanding of the relationship issues, family dynamics, cultural implications, and basic person-in-context approach allow for unique collaboration with the health care team, family, and community supports to develop successful transition plans and programs.

Medication knowledge: an initial step in self-management for youth with inflammatory bowel disease.

OBJECTIVE: Adolescents with chronic illness need to develop skills to independently manage their own health. Knowledge of medication is an early step in this process. We explored which factors affect acquisition of medication knowledge in adolescents with inflammatory bowel disease (IBD). PATIENTS AND METHODS: Consecutive patients with IBD older than 10 years received a confidential survey at an outpatient visit including questions regarding medication name, dose, and adverse effects. Results were compared with the medical record. Demographic characteristics obtained included age, sex, disease duration, and type of IBD. RESULTS: Completed surveys were returned by 294 patients (65% of those approached). Overall, 95% of patients could name their medication and 54% could identify their correct dose. Of 95 patients receiving biologics, 88% could identify the medicine and 50% could report either dose or timing. Of 139 patients on immunomodulator therapy, 94% could name medicine and 68% reported correct dose. Sex, type, or duration of disease did not affect name or dose knowledge. Generally, older patients did not demonstrate better medication or dosage knowledge than younger patients, although there was a significant trend toward improved knowledge of side effects for older patients. However, <32% of all of the patients could report a single major medication side effect. CONCLUSION: Medication knowledge is an early stage of self-management, yet many adolescents cannot report the dose of IBD medications, nor know the side effects of immunosuppression. This finding persists into late adolescence, which has ramifications for patients as they separate from parents for college or work.

Transition of adolescents with inflammatory bowel disease from pediatric to adult care: a survey of adult gastroenterologists.

OBJECTIVES: Transition of patients with inflammatory bowel disease (IBD) from pediatric to adult providers requires preparation. Gastroenterologists for adult patients ("adult gastroenterologists") may have expectations of patients that are different from those of pediatric patients. We sought to explore the perspectives of adult gastroenterologists caring for adolescents and young adults with IBD, to improve preparation for transition. MATERIALS AND METHODS: A survey sent to 1132 adult gastroenterologists caring for patients with IBD asked physicians to rank the importance of patient competencies thought necessary in successful transition to an adult practice. Providers reported which problems occurred in patients with IBD transitioning to their own practice. Adult gastroenterologists were asked about medical and developmental issues that are unique to adolescence. RESULTS: A response rate of 34% was achieved. Adult gastroenterologists reported that young adults with IBD often demonstrated deficits in knowledge of their medical history (55%) and medication regimens (69%). In addition, 51% of adult gastroenterologists reported receiving inadequate medical history from pediatric providers. Adult providers were less concerned about the ability of patients to identify previous and current health care providers (19%), or attend office visits by themselves (15%). Knowledge of adolescent medical and developmental issues was perceived as important by adult gastroenterologists; however, only 46% felt competent addressing the developmental aspects of adolescents. CONCLUSIONS: For successful transition, adolescents and young adults with IBD need improved education about their medical history and medications. Pediatric providers need to improve communication with the receiving physicians. In addition, adult providers may benefit from further training in adolescent issues. Formal transition checklists and programs may improve the transition of patients with IBD from pediatric to adult care.

Effective advocacy for patients with inflammatory bowel disease: communication with insurance companies, school administrators, employers, and other health care overseers.

In addition to their physical challenges, children and adolescents with inflammatory bowel disease (IBD) living in the United States face a number of administrative and regulatory hurdles that affect their quality of life. This article, written by a physician, attorney/patient advocate, and social worker, discusses a number of these challenges and describes how the provider can help his or her patient overcome them. Specifically, the article discusses 4 areas in detail: appeals of denials of coverage from insurance companies and third party payors; assisting children with IBD with classroom and school accommodations; assisting uninsured children in obtaining Social Security benefits; and aiding a parent to care for their child using the Family and Medical Leave Act. Although this article has a pediatric focus, adults have similar advocacy needs. Case examples and sample letters to third-party payors, schools, and employers are included in this article.

Educate, communicate, anticipate-practical recommendations for transitioning adolescents with IBD to adult health care.

The cyclical nature of chronic illness requires that children with inflammatory bowel disease be transitioned to the adult medical system with as much continuity of care as possible. Transition from pediatric to adult medical care continues to present significant barriers. The philosophy of transition centers on a process, with the actual transfer to adult care as a point along this clinical pathway. Concrete steps can be taken to help patients prepare for new responsibilities. The aim of this review is to propose a clinical and developmental timeline for both patients and their medical team, including specific responsibilities for both, so that the partnership can best promote a successful transition.

Impact of Educational Cartoon on Pediatric Bowel Preparation Quality at Time of Colonoscopy.

OBJECTIVE: To evaluate if addition of educational cartoon to pediatric bowel preparation instructions improves the quality of bowel preparation and patient experience. METHODS: Patients were randomized to control group receiving standard bowel preparation instructions or intervention group receiving additional educational cartoon. To objectively rate bowel preparation, a blinded endoscopist completed numeric Ottawa score (0-14, with 0 being best). The family also completed a questionnaire rating the bowel preparation process. RESULTS: Data from 23 patients were analyzed. Mean Ottawa score in the intervention group compared with controls was not significantly different (mean scores 3.73 and 3.33, respectively; P = .384). Level of education was significantly correlated with better Ottawa score in the overall population (ρ = -.462, P = .026) and within the control group (ρ = -.658, P = .02). Both groups of patients reported positive experience with bowel preparation. CONCLUSION: There may be benefit to further investigation of this educational cartoon in parents with less than college level education or non-English-speaking families in larger population of patients.

Coping with college and inflammatory bowel disease: implications for clinical guidance and support.

BACKGROUND: Studies have shown that young adults with chronic diseases, including inflammatory bowel disease (IBD), experience greater difficulty during the transition to college, reaching lower levels of educational attainment and reporting greater levels of perceived stress than their otherwise-healthy peers. We performed a qualitative study to better understand how underlying illness shapes the college experience for patients with IBD and how the college experience, in turn, impacts disease management. METHODS: Fifteen college students with IBD were recruited from the Boston Children's Hospital Center for IBD. We conducted an approximately 1 hour semistructured qualitative interview with each participant, and the interviews were thematically analyzed after an iterative and inductive process. RESULTS: Four primary themes were identified: (1) The transition experience of college students with IBD is shaped by their health status, perceived readiness, and preparedness, (2) Elements of the college environment pose specific challenges to young adults with IBD that require adaptive strategies, (3) College students with IBD integrate their underlying illness with their individual and social identity, and (4) College students navigate health management by conceptualizing themselves, their families, and providers as serving particular roles. CONCLUSIONS: For young adults with IBD, college is a proving ground for demonstrating self-care and disease management practices. Future initiatives aimed at this population should recognize the evolving roles of patients, parents, and providers in disease management. Increased attention should also be paid to the promotion of patient's self-management and the unique challenges of the structural and psychosocial college environment.

When independent healthcare behaviors develop in adolescents with inflammatory bowel disease.

BACKGROUND: Patients with chronic health needs are expected to gradually assume responsibility for health maintenance behavior as they move toward adulthood. We sought to evaluate the influence of factors such as age, duration of disease, and gender by examining the self-reported health behaviors of adolescents with inflammatory bowel disease (IBD). METHODS: Confidential voluntary surveys were administered to all IBD outpatients over age 10 during a 4-month period. Questions addressed responsibility for health behaviors such as medication, provider visits, and communication. Likert scales measured the degree of independence: 1 (my parents only) through 3 (parents share equally with me) to 5 (I do it myself). Patient participation during doctor visits was also assessed. RESULTS: Of 358 patients approached, 294 (82%) returned completed surveys. Respondents were 51% male and 69% had Crohn's disease. Patients took increasingly active roles, but by ages 19-21 only 45% ordered medication refills, and 50% picked up medication from pharmacy. Only 35% of 19-21-year-olds scheduled appointments and 30% contacted providers between visits if problems arose. Most patients could answer provider questions (55% at age 16-18) but fewer asked questions of the provider (15% at the same age). Males were less likely to order their own prescription refills (P = 0.017) or prepare questions (P = 0.009). Duration of disease did not change skill acquisition. CONCLUSIONS: Adolescents develop independence in managing their IBD slowly and many patients ≥ 18 years are still assisted by parents. Focus on specific skill acquisition may help patients with self-management skills expected in adult healthcare.

Self-management of older adolescents with inflammatory bowel disease: a pilot study of behavior and knowledge as prelude to transition.

OBJECTIVE: Patients gradually assume responsibility for self-management. This study sought to determine whether adolescents with inflammatory bowel disease (IBD) have developed key skills of self-management prior to the age at which many transfer to adult care. PATIENTS AND METHODS: Adolescents aged 16 to 18 years old in the Children's Hospital Boston IBD database (94 total) received a mailed survey assessing knowledge and confidence of their own health information and behaviors. RESULTS: Respondents (43%) could name medication and dose with confidence but had very poor knowledge of important side effects. Most patients deferred responsibility mostly or completely to parents for scheduling appointments (85%), requesting refills (75%), or contacting provider between visits (74%). CONCLUSIONS: Older adolescents with IBD have good recall of medications but not of side effects. Parents remain responsible for the majority of tasks related to clinic visits and the acquisition of medications.