Character Development Pilot Evaluation of Two Programs for Youth with Chronic Illness

This article describes the pilot evaluation of two Positive Youth Development (PYD) programs for youth with child onset chronic illness (COCI), reporting how the programs influenced participants’ character development. College students with COCI led high school students with COCI through activities pertaining to different aspects of growing up with a chronic illness. Participants completed the Positive Youth Development Inventory-Short Form (PYDI-S), which measures seven domains of youth perceptions of the contribution to their development from the program. Participants reported that both programs helped them the most with personal standards, which corresponds well to character development on the full version of the Positive Youth Development Inventory (PYDI). They also had high scores on prosocial behavior and future orientation, both important domains for character development. We discuss the idea that interventions promoting character development for youth with COCI are critical for promoting a positive narrative for chronically-ill youth, their parents, and society

Character Development Pilot Evaluation of Two Programs for Youth with Chronic Illness

This article describes the pilot evaluation of two Positive Youth Development (PYD) programs for youth with child onset chronic illness (COCI), reporting how the programs influenced participants’ character development. College students with COCI led high school students with COCI through activities pertaining to different aspects of growing up with a chronic illness. Participants completed the Positive Youth Development Inventory-Short Form (PYDI-S), which measures seven domains of youth perceptions of the contribution to their development from the program. Participants reported that both programs helped them the most with personal standards, which corresponds well to character development on the full version of the Positive Youth Development Inventory (PYDI). They also had high scores on prosocial behavior and future orientation, both important domains for character development. We discuss the idea that interventions promoting character development for youth with COCI are critical for promoting a positive narrative for chronically-ill youth, their parents, and society

Lost in transition: resident and fellow training and experience caring for young adults with chronic conditions in a large United States’ academic medical center

Background: The transition from pediatric to adult healthcare is a vulnerable time for adolescents and young adults (AYA), especially those with chronic conditions. Successful transition requires communication and coordination amongst providers, patients, and families. Unfortunately, multiple studies have demonstrated that the majority of practicing providers do not feel prepared to help AYA patients through health care transition, but little is known about the transition/transfer aptitudes of physician trainees. Objectives: The purpose of this study was to establish the transition/transfer training that residents and fellows from different fields receive – and determine what training factors are associated with increased confidence in core transition/transfer skills. Design: A 20-item electronic survey regarding experiences caring for AYA patients was sent to all 2014–2015 graduate medical education (GME) trainees at our institution. Results: Forty-nine percent (479/985) of trainees responded: 60 pediatric, 387 non-pediatric, and 32 ‘combined’ (e.g., Medicine/Pediatrics or Family Medicine). Trainees from all three categories of programs reported similar exposure to AYA patients with chronic conditions, with a median of 1–3 encounters per month. A quarter of trainees rated themselves as ‘not at all prepared’ to speak with a counterpart provider about a transferring patient, while nearly half of trainees considered themselves ‘not at all prepared’ to speak with a patient and family about transition. Trainee confidence in performing these two skills was strongly predicted by three factors: increased exposure to AYA with chronic conditions, education (training or role modeling) in transition skills, and experience practicing transition skills. Of these, the strongest association with trainee confidence was experience practicing the skills of communicating with other providers (OR = 13.0) or with patients/families (OR = 14.5). Conclusion: Despite at least monthly encounters with AYA with chronic conditions, most residents and fellows have very little experience communicating across the pediatric-to-adult healthcare divide, highlighting training opportunities in graduate medical education

Using PROMIS-29 to determine symptom burdens in the context of the Type 1 and 2 systemic lupus erythematosus (SLE) model: a cross sectional study

Abstract Objective To account for heterogeneity in systemic lupus erythematosus (SLE) and bridge discrepancies between patient- and physician-perceived SLE activity, we developed the Type 1 and 2 SLE model. We examined PROMIS-29 scores, a composite patient-reported outcome (PRO) measure, through the lens of the model. Methods Patients completed PROMIS-29 and the polysymptomatic distress scale (PSD). Rheumatologists completed the SLE disease activity index (SLEDAI), and physician’s global assessments (PGAs) for Type 1 and 2 SLE. We defined Type 1 SLE using SLEDAI, Type 1 PGA, and active nephritis, and Type 2 SLE using PSD and Type 2 PGA. We compared PROMIS-29 T-scores among Type 1 and 2 SLE groups and explored whether PROMIS-29 can predict Type 1 and 2 SLE activity. Results Compared to the general population, patients with isolated Type 1 SLE reported greater pain and physical dysfunction but less depression and improved social functions; patients with high Type 2 SLE (irrespective of Type 1 activity) reported high levels of pain, fatigue, and social and physical limitations. Patients with minimal Type 1 and 2 SLE had less depression and greater physical functioning with other domains similar to national norms. PROMIS-29 predicted Type 2 but not Type 1 SLE activity. Conclusion PROMIS-29 similarities in patients with high Type 2 SLE, with and without active Type 1 SLE, demonstrate the challenges of using PROs to assess SLE inflammation. In conjunction with the Type 1 and 2 SLE model, however, PROMIS-29 identified distinct symptom patterns, suggesting that the model may help clinicians interpret PROs

Intermittent and Persistent Type 2 lupus: patient perspectives on two distinct patterns of Type 2 SLE symptoms

Objective We have developed a new conceptual model to characterise the signs and symptoms of SLE: the Type 1 and 2 SLE Model. Within the original model, Type 1 SLE consists of inflammatory manifestations like arthritis, nephritis and rashes; Type 2 SLE includes symptoms of fatigue, myalgia, mood disturbance and cognitive dysfunction. Through in-depth interviews, we explored how the Type 1 and 2 SLE Model fits within the lived experience of patients with SLE, with a focus on the connection between Type 1 and Type 2 SLE symptoms.Methods Semistructured in-depth interviews were conducted among adult participants meeting 1997 American College of Rheumatology or Systemic Lupus International Collaborating Clinics criteria for SLE. Participants were purposefully selected for age, race, sex and nephritis history. All interviews were audio-recorded and transcribed. Data were analysed through episode profile and thematic analysis.Results Through interviews with 42 patients with SLE, two patterns of Type 2 SLE emerged: Intermittent (n=18) and Persistent (n=24). Participants with Intermittent Type 2 SLE described feeling generally well when Type 1 is inactive; these participants were younger and had more internal SLE manifestations. Participants with Persistent Type 2 described always experiencing Type 2 symptoms despite inactive Type 1, although the severity may fluctuate. Participants with Persistent Type 2 SLE experienced traditional lupus symptoms of joint pain, hair loss and rash, but less often had severe organ system involvement.Conclusions By listening to the stories of our patients, we found two underlying patterns of Type 2 SLE: Intermittent Type 2 symptoms that resolve in synchrony with Type 1 inflammatory symptoms, and Persistent Type 2 symptoms that continue despite remission of Type 1 symptoms

Differences in Healthcare Transition Views, Practices, and Barriers Among North American Pediatric Rheumatology Providers from 2010 to 2018

Background/Purpose: Healthcare transition is the “purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.” The American College of Physicians has partnered with national organizations, including the ACR, to develop guidelines and tools to promote a smooth transition to adult care. We aim to assess current transition practices and beliefs among North American pediatric rheumatology providers and to identify differences from a 2010 provider survey published by Chira et al. Methods: In April 2018, Childhood Arthritis and Rheumatology Research Alliance (CARRA) members received a 25-item online survey about healthcare transition. Got Transition’s Current Assessment of Health Care Transition Activities for Transitioning Youth to Adult Health Care Providers was used to measure clinical transition processes on a scale of 1 (basic) to 4 (comprehensive). Bivariate data analysis was used to compare 2010 and 2018 survey findings. Results: Over half of CARRA members completed the 2018 survey. Participants included pediatric rheumatologists (74%), adult- and pediatric-trained rheumatologists (4%), pediatric rheumatology fellows (18%), and other (4%), including emeritus faculty and mid-level providers. Most belonged to university-affiliated practices (87%) in the U.S. (91%). Providers aim to transfer patients at age 18 (23%) or 21 (33%), but the actual age of transfer is often 21 or older (56%). The most common target age to begin transition planning was 15-17 (49%). Few providers use the ACR transition tools (31%) or have a dedicated transition clinic (23%). Only 17% have a transition policy in place; 63% do not consistently address healthcare transition. Transition outcomes of interest included an adult rheumatology visit within 6 months of the last pediatric visit (80%), adherence to medications and plan of care (78%), continuous insurance coverage (78%), and patient-reported gaps in access to care (76%). When compared to the 2010 survey, improvement was noted in 3 of 12 transition barriers: availability of adult primary care providers, availability of adult rheumatologists, and transition knowledge and skills of pediatric staff (p\u3c0.001). However, more providers cited the close bond among adolescents, parents and pediatric providers as a barrier (Figure 1). Conclusion: This survey of pediatric rheumatology providersdemonstrates some improvement in transition barriers since 2010, though most practices still maintain minimal support for patients and providers around healthcare transition. Further research is needed to understand how to effectively facilitate transition to adult care for young adults with childhood-onset rheumatic diseases