Conference proceeding

Transition to adult health care: Setting the stage

As adolescents with type 1 diabetes (T1D) progress to adulthood, they assume responsibility for diabetes self-management while dealing with competing life demands, decreasing parental support, and the transfer to adult care. Lower perceived quality of life (QOL) may hamper diabetes management, which is associated with suboptimal glycemic levels. Our objective was to determine associations of diabetes- and health-related QOL with glycemic management (glycated hemoglobin [A1C]) in adolescents with T1D before their transfer to adult care.

We conducted a cross-sectional analysis of baseline data from the Group Education Trial to Improve Transition (GET-IT- T1D) in adolescents with T1D (16 to 17 years of age). Participants completed validated questionnaires measuring diabetes-related QOL (PedsQL 3.2 Diabetes Module) and health-related QOL (PedsQL 4.0 Generic Core Scales). Associations of QOL Total and subscale scores with A1C were assessed using linear regression models adjusted for sex, diabetes duration, socioeconomic status, insulin pump use, and mental health comorbidity.

One hundred fifty-three adolescents with T1D were included (mean age, 16.5 [standard deviation, 0.3] years). Diabetes-related QOL Total scores (adjusted β=−0.04; 95% confidence interval [CI], −0.05 to −0.02) as well as subscale scores for Diabetes Symptoms (adjusted β=−0.02; 95% CI, −0.04 to −0.00) and Diabetes Management (adjusted β=−0.04; 95% CI, −0.05 to −0.02) were inversely associated with A1C. Health-related QOL Total scores were not associated with A1C, but Psychosocial Health subscale scores were (adjusted β=−0.01; 95% CI, −0.03 to −0.00).

Our results suggest that strategies focussing on diabetes-related QOL and psychosocial health may help prepare adolescents for the increasing responsibility of diabetes self-care.

Lorsque les adolescents atteints du diabète de type 1 (DT1) passent à l’âge adulte, ils assument la responsabilité de l’autoprise en charge du diabète tout en faisant face aux exigences concurrentes de la vie, à la diminution du soutien parental et à la transition vers les soins aux adultes. Une plus faible qualité de vie (QdV) perçue peut nuire à la prise en charge du diabète, qui est associée à des concentrations sous-optimales de la glycémie. Notre objectif était de déterminer les associations entre la QdV liée au diabète et liée à la santé, et la régulation de la glycémie (hémoglobine glyquée [A1c]) chez les adolescents atteints du DT1 avant leur transfert vers les soins aux adultes.

Nous avons réalisé une analyse transversale des données initiales de l’essai Group Education Trial to Improve Transition (GET-IT) chez les adolescents atteints du DT1 (âgés de 16-17 ans). Les participants ont rempli des questionnaires validés d’évaluation de la QdV liée au diabète (module Pediatric Quality of Life Inventory Version (PedsQL) 3.2 du diabète) et de la qualité de vie liée à la santé (échelles génériques de base PedsQL 4.0). Nous avons évalué les associations entre les scores totaux et de la sous-échelle de la QdV et l’A1c au moyen de modèles de régression linéaires ajustés selon le sexe, la durée du diabète, le statut socioéconomique, l’utilisation de la pompe à insuline et les comorbidités liées à la santé mentale.

Nous avons inclus 153 adolescents atteints du DT1 (âge moyen [écart type] : 16,5 [0,3] ans). Les scores totaux de la QdV liée au diabète (ajustés β -0,04; intervalle de confiance [IC] à 95 % -0,05, -0,02) et les scores des sous-échelles des symptômes du diabète (ajustés β -0,02; IC à 95 % -0,04, -0,00) et de la prise en charge du diabète (ajustés β -0,04; IC à 95 % -0,05, -0,02) étaient inversement associés à l’A1c. Les scores totaux de la QdV liée à la santé n’étaient pas associés à l’A1c, mais les scores de la sous-échelle de la santé psychosociale l’étaient (ajustés β -0,01; IC à 95 % -0,03, -0,00).

Nos résultats indiquent que les stratégies axées sur la QdV liée au diabète et la santé psychosociale peuvent aider à préparer les adolescents à leur responsabilité accrue à l’égard des autosoins liés au diabète.

Advances in medicine and technology, have enabled greater numbers of children with complex illness to survive into adulthood. Adolescents with these conditions are at high risk for adverse outcomes when transitioning to adult health care. The “Staging Transition for Every Patient” (STEP) Program was developed to systematically improve the transition from pediatric to adult healthcare.

This article details the development of the STEP program and the novel use of “Individualized Transition Plans” (ITP) in the clinic setting.

A provider needs’ assessment of the existing transition services among youth with specific diagnoses was performed, a steering committee was developed that created a transition policy, and a medical home within the adult system was established with an interdisciplinary approach. The ITP focuses on 5 individualized goals, it was developed and tested with the first-year cohort of patients.

In the initial needs assessment, 7 of 35 diagnoses were found to have an effective transition plan. The STEP program partnered with departments across the adult facility to conduct 267 interdisciplinary patient visits. In the first year, 169 new patients were seen in the clinic. The average age was 23.0 ± 4.1 years old. The ITP goals included referrals to adult specialists, advanced care planning, career and education, transition readiness, caregiver burden, and an emergency sick plan.

There is a need for organized transition care for medically complex youth. The STEP program answers that need by addressing the unique needs of each patient. Individualized transition planning builds trust and addresses multiple domains of health.

To identify current medical and psychosocial needs and to examine the effectiveness of healthcare transition program for adult-aged patients with neuromuscular conditions transitioning from pediatric to adult services.

At Neuromuscular Transition Clinic visit, 46 patients were evaluated and referred to adult-based providers, if did not currently have one, from an acquired list of interested clinicians. At mean follow-up of 22 months, 42 were interviewed by phone regarding referrals for Core Services (primary care, physiatry, dental care and gynecology), Medical Specialties and Rehabilitation Services. Mean age was 30 years with 62% males. Majority (74%) had cerebral palsy. Sixty percent were non-ambulatory.

As per protocol, all were indicated to need Core Services. Eighty-three percent already had adult primary care provider. Most referrals were given for physiatry (62%), vocational training (100%), and occupational therapy (88%). At follow-up, visits were completed most frequently with adult provider for primary care (100%), occupational therapy (78%), and neurology (75%). Referred provider was seen 100% for physiatry, neurology, physical therapy, occupational therapy and vocational training. Of the total 125 referrals given across all services, 73 (58%) participants had completed a visit with an adult provider.

As only about 60% transitioned to adult-based services after referral, healthcare transition remains challenging and requires tailoring of services according to patients' needs, staff and willing-and-available adult-based providers.

Transitioning healthcare of patients with neuromuscular conditions from pediatric- to adult-based providers remains challenging. This clinical specialty requires tailoring of services based on patient's needs, and availability of adult-based providers and resources.

Maple syrup urine disease (MSUD) is an autosomal recessive metabolic disease resulting in impaired or absent breakdown of branched-chain amino acids (BCAA) valine, isoleucine, and leucine. Classic MSUD often presents in post-natal periods, at times before newborn screening results, and is treated with a protein restricted diet supplemented with medical food and close follow up to prevent toxic buildup of blood leucine.

Acute episodes of decompensation are prevented by early recognition and treatment. Acute episodes of metabolic decompensation in patients with MSUD are medical emergencies that require immediate treatments as cerebral edema may lead to brain-stem compression resulting in death. As the early outcomes improve for MSUD patients, the long-term sequelae of chronic hyperleucemia are being elucidated and include cognitive impairment, mental health disorders, and movement disorders.

In this report we present an adult patient with MSUD with attention deficit, hyperactivity type (ADHD) and depression due to prolonged exposure to elevated leucine managed with community support services who presented to the emergency department with new onset of acute hallucinations. He was held in the emergency department awaiting involuntary commitment to a psychiatric facility and underwent psychiatric treatments for suspected new onset hallucinations without improvement. Upon notification of metabolic specialists and initiation of appropriate therapy of MSUD, his leucine level normalized rapidly with resolution of his acute psychosis.

This case describes the acute presentation of psychosis in the setting of long-term toxicity of leucine. This case also highlights the importance of transition of care, education and planning in patients with inborn errors of metabolism.

Hospitalizations for children with complex chronic conditions (CCC) at pediatric hospitals have risen over time. Little is known about what hospital types, pediatric or adult, adolescents, and young adults (AYA) with CCCs use. We assessed the types of hospitals used by AYAs with CCCs.

We performed a cross-sectional study of 856,120 hospitalizations for AYAs ages 15-to-30 years with ≥1 CCC in the 2017 National Inpatient Sample. We identified AYA with CCC by ICD-10-CM diagnosis codes using the pediatric CCC classification system version 2. Hospital types included pediatric hospitals (n = 70), adult hospitals with pediatric services (n = 277), and adult hospitals without pediatric services (n = 3975). We analyzed age trends by hospital type and CCC count in 1-year intervals and dichotomously (15–20 vs 21–30 years) with the Cochran-Armitage test.

The largest change in pediatric hospitals used by AYA with CCCs occurred between 15 and 20 years with 39.7% versus 7.7% of discharges respectively (P< 0.001). For older AYA (21 to 30 years), 1.0% of discharges occurred at pediatric hospitals, compared with 65.6% at adult hospitals without pediatric services (P < 0.001). Older AYA at pediatric hospitals had more technology dependence (42.5%) versus younger AYA (27.6%, p < 0.001).

Most discharges for AYAs ≥21 years with CCCs were from adult hospitals without pediatric services. Higher prevalence of technology dependence and neuromuscular CCCs, as well as multiple CCCs, for AYA 21-to-30 years discharged from pediatric hospitals may be related to specific care needs only found in pediatric settings and challenges transferring into adult hospital care.

Youth with special health care needs often experience significant difficulty transitioning into adult health care services and adult life. Services supporting youths' transition from pediatric to adult health care (Health Care Transition (HCT)) have been a priority for nearly 30 years to improve this transition process. The Health Resources and Service Administration, Maternal and Child Health Bureau have measured HCT service provision since 2001 but the longitudinal use of this measure has never been examined (Blumberg, 2003; Maternal and Child Health Bureau, n.d.).

This manuscript highlights the consistent and inconsistent uses of HCT constructs in two prominent national surveys (the National Survey of Children with Special Health Care Needs (NS-CSHCN) and the National Survey of Children's Health (NSCH)) between 2001 and 2019. All studies utilizing an HCT measure within a national survey between the 18 years were included in this examination.

Significant changes have been made to the measurement of HCT service provision resulting in inconsistencies over the last 18 years. Measurement criteria and survey questions have changed substantially from the NS-CSHCN and NSCH limiting one's ability to examine trends in HCT since 2001. Since 2016, few changes have been made, allowing for analysis of trends over time. Importantly, the NSCH includes added questions pertaining to HCT that are not included in the composite HCT outcome measure.

Future work should include a validation study of the HCT outcome in the National Survey of Children's Health and inclusion of additional HCT questions to promote continued and extensive use of a measure that more fully represents the needs of youth and their families.