A novel transition clinic structure for adolescent and young adult patients with childhood onset rheumatic disease improves transition outcomes

Background The transition of health care from Pediatric to Adult providers for adolescents and young adults with chronic disease is associated with poor outcomes. Despite the importance of this transition, over 80% of these patients do not receive the services necessary to transition to Adult health care. In 2018, we initiated a transition clinic structure, integrating an Internal Medicine - Pediatrics trained Adult Rheumatologist in a Pediatric Rheumatology clinic to guide this transition. Our goal was to improve transition outcomes. We report the methods of this clinic and its preliminary outcomes. Methods For patients referred to the transition clinic, the Adult Rheumatologist assumed medical management and implemented a six-part modular transition curriculum. This curriculum included a Transition Policy, Transition Readiness Assessment, medication review and education, diagnosis review and education, and counseling on differences between Pediatric and Adult-oriented care. Eligible patients and their families were enrolled in a prospective observational outcomes research registry. Initial data from this transition clinic is reported including adherence with certain aspects of the transition curriculum and clinic utilization. Results The transition clinic Adult Rheumatologist saw 177 patients in 2 years, and 57 patients were eligible for, approached, and successfully enrolled in the registry. From this registry, all patients reviewed the Transition Policy with the Adult Rheumatologist and 45 (78.9%) completed at least one Transition Readiness Assessment. Of the 22 patients for whom transition was indicated, all were successfully transitioned to an Adult Rheumatologist. 17 (77.3%) continued care post-transition with the transition clinic Adult Rheumatologist, and 5 (22.7%) continued care post-transition with a different Adult Rheumatologist. The median time between the last transition clinic visit and first Adult clinic visit was 5.1 months. Conclusions Our experience demonstrated the success of our clinic model regarding participation in the transition curriculum and improved clinic utilization data. Our results are an improvement over transition rates reported elsewhere that did not implement our model. We believe that this structure could be applied to other primary care and subspecialty clinics. Trial registration This research was approved by the University of Utah Institutional Review Board (IRB) in January 2019 (IRB_00115964). Patients were retrospectively registered if involved prior to this date.

Eight-Year Retrospective Study of Young Adults in a Diabetes Transition Clinic

The transition of people from paediatric to adult diabetes services is associated with worsening glycaemia and increased diabetes-related hospitalisation. This study compared the clinical characteristics of those with and without mental health conditions among attenders at a diabetes young adult clinic diabetes before and after changes in service delivery. Retrospective audit of 200 people with diabetes attending a Sydney public hospital over eight years corresponding to the period before (2012–2016) and after (2017–2018) restructuring of a clinic for young adults aged 16–25 years. Characteristics of those with and without mental health conditions (depression, anxiety, diabetes related distress, eating disorders), were compared. Among clinic attenders (type 1 diabetes n = 184, 83.2%), 40.5% (n = 89) had a mental health condition particularly, depression (n = 57, 64%), which was higher among Indigenous than non-Indigenous people (5.6% vs. 0.8%, p = 0.031) but similar between diabetes type. Over eight years, those with, compared with those without a mental health condition had higher haemoglobin A1c (HbA1c) at the last visit (9.4% (79 mmol/mol) vs. 8.7% (71 mmol/mol), p = 0.027), the proportion with diabetic ketoacidosis (DKA 60.7% vs. 42.7%, p = 0.009), smoking (38.4 vs. 13.6%, p = 0.009), retinopathy (9.0 vs. 2.3%, p = 0.025), multiple DKAs (28.4 vs. 16.0%, p = 0.031) were significantly higher. Having a mental health condition was associated with 2.02 (95% confidence intervals 1.1–3.7) fold increased risk of HbA1c ≥9.0% (75 mmol/mol). Changes to the clinic were not associated with improvements in mental health condition (39.0% vs. 32.4%, p = 0.096). In conclusion, we found that mental health conditions, particularly depression, are common in this population and are associated with diabetes complications. Diabetes type and clinic changes did not affect the reported mental health conditions. Additional strategies including having an in-house psychologist are required to reduce complication risks among those with mental health conditions.

Eight-Year Retrospective Study of Young Adults in a Diabetes Transition Clinic

The transition of people from paediatric to adult diabetes services is associated with worsening glycaemia and increased diabetes-related hospitalisation. This study compared the clinical characteristics of those with and without mental health conditions among attenders at a diabetes young adult clinic diabetes before and after changes in service delivery. Retrospective review of 200 people with diabetes attending a Sydney public hospital over eight years corresponding to the period before (2012-2016) and after (2017-2018) restructuring of a clinic for young adults aged 16-25 years. Characteristics of those with and without mental health conditions (depression, anxiety, diabetes related distress, eating disorders), were compared. Among clinic attenders (type 1 diabetes n=184, 83.2%), 40.5% (n=89) had a mental health condition particularly, depression (n=57, 64%), which was higher among Indigenous than non-Indigenous people (5.6% vs 0.8% p=0.031) but similar between diabetes type. Over eight years, those with, compared with those without a mental health condition had higher HbA1c at the last visit (9.4%[79 mmol/mol] vs 8.7% [71 mmol/mol], p=0.027), the proportion with diabetic ketoacidosis (DKA 60.7% vs 42.7%,p=0.009), smoking (38.4 vs 13.6%,p=0.009), retinopathy (9.0 vs 2.3%,p=0.025), multiple DKAs (28.4 vs 16.0%,p=0.031) were significantly higher. Having a mental health condition was associated with 2.02 (95% Confidence intervals 1.1-3.7) fold increased risk of HbA1c ≥ 9.0%[75mmol/mol]. Changes to the clinic were not associated with improvements in mental health condition (39.0% vs 32.4%, p=0.096). In conclusion, we found that mental health conditions, particularly depression, are common in this population and are associated with diabetes complications. Diabetes type and clinic changes did not affect the reported mental health conditions. Additional strategies are required to reduce complication risks among those with mental health conditions. .

Factors associated with self-management independence and quality of life for adolescents and young adults with spina bifida engaged in a guideline-based transition clinic

PURPOSE: To determine characteristics associated with self-management independence and quality of life (QOL) among adolescents and young adults with spina bifida (AYASB) engaged in a spina bifida (SB) health care transition clinic. METHODS: During SB transition visits, Eighty-eight AYASB ages 14-20 completed the Adolescent/Young Adult Self-management and Independence Scale II Self-Report/SB (AMIS II-SR/SB), scores ranging from 1–7 with 7 indicating full independence in activities, and the QUAlity of Life Assessment in Spina bifida for Teens (QUALAS-T), which has two subscales, family/independence (QFI) and bowel/bladder (QBB), with scores ranging from 0-100 with 100 indicating maximal QOL score. Demographic and clinical variables were collected from the electronic medical record. RESULTS: The baseline AMIS II-SR/SB score was 3.3 (SD 1.0). Baseline scores for QUALAS-T QFI and QBB subscales were 73.8 (SD 19.9) and 63.8 (SD 25.8). Older age was associated with a higher baseline AMIS II-SR/SB score (p = 0.017). Over time, AMIS II-SR/SB total significantly improved (p < 0.001), but QFI and QBB did not. AYASB not on chronic intermittent catheterization (CIC) and those using urethral CIC significantly improved in AMIS II-SR/SB total scores (p = 0.001), but those using abdominal channel CIC did not. CONCLUSION: Baseline bladder management method was associated with self-management improvement for AYASB engaged in a SB-specific transition clinic.

Feasibility of computerized clinical decision support for pediatric to adult care transitions for patients with special healthcare needs

The objective of this study was to determine the feasibility of a computerized clinical decision support (cCDS) tool to facilitate referral to adult healthcare services for children with special healthcare needs. A transition-specific cCDS was implemented as part of standard care in a general pediatrics clinic at a tertiary care academic medical center. The cCDS alerts providers to patients 17–26 years old with 1 or more of 15 diagnoses that may be candidates for referral to an internal medicine adult transition clinic (ATC). Provider responses to the cCDS and referral outcomes (e.g. scheduled and completed visits) were retrospectively analyzed using descriptive statistics. One hundred and fifty-two patients were seen during the 20-month observation period. Providers referred 87 patients to the ATC using cCDS and 77% of patients ≥18 years old scheduled a visit in the ATC. Transition-specific cCDS tools are feasible options to facilitate adult care transitions for children with special healthcare needs.

Multidisciplinarity in Transition Pathways for Patients With Kidney Disease: The Current State of Play

In the field of medical care, successful transition from pediatric-centered to adult-oriented healthcare can provide a sense of continuity in the development of youth, and prepare them to accept responsibility for and manage their own chronic kidney condition in complete autonomy. The so-called transition process requires the presence of some basic aspects: a multidisciplinary team, which acts as a bridge between child and adult services; a comprehensive clinical, cognitive, psychological, and social change for the young people; the involvement of family and caregivers. Within the framework of transition and chronicity during the developmental age, we selected international papers explaining models which agreed on some important steps in the transition process, although many differences can be observed between different countries. In fact, in Europe, the situation appears to be heterogeneous as regards certain aspects: the written transition plan, the educational programmes, the timing of transfer to adult services, the presence of a transition coordinator, a dedicated off-site transition clinic. We then analyzed some studies focusing on patients with renal diseases, including the first to contain a standardized protocol for transition which was launched recently in the USA, and which seems to have already achieved important positive, although limited, results. In Italy, the issue of transition is still in its infancy, however important efforts in the management of chronic kidney disease have already been initiated in some regions, including Emila Romagna, which gives us hope for the future of many young people.

Exploring the attitudes and experiences of adolescents with type 1 diabetes towards transition of care

Introduction Transition from adolescence to adult care is very challenging for most patients. Without appropriate appointments and education, adolescents can get lost to follow up within one-year of transitioning to adult care (Mistry et al. Diabet Med 32(7):881–885, 2015). Loss to follow-up can increase risks of adverse short and long term diabetes-related complications, with healthcare contacts mainly limited to crisis-based management (Iversen et al. Scand J Caring Sci 33(3):723–730, 2019). Aims The purpose of this study was to evaluate the patient’s perspective of the process of transition from paediatric to adult-based diabetes services in the Mid-West Region of Ireland. Methods We implemented a new transition clinic at University Hospital Limerick with the collaboration of paediatric and adult endocrinology teams. Eighteen patients opted to attend the clinic, but only 17 patients consented to participate in a qualitative assessment study and completed questionnaires before and after the transition clinic. Results and conclusion In terms of medical management, patients had a good understanding of hypoglycaemia and insulin dose adjustment principles, but were least comfortable with carbohydrate counting. Patients self-ranked their knowledge on driving and sexual health with a diagnosis of diabetes as poor, in comparison to understanding effects of alcohol and smoking on diabetes. Overall, a majority of the respondents felt more confident in moving to adult-care after attending the transition clinic.

Evaluating transition in Turner syndrome in the West of Scotland

Background A Turner Syndrome (TS) Transition clinic, Royal Hospital for Children Glasgow (RHCG), with paediatric and adult endocrinology/gynaecology teams was established in 1998 with an aim of improving health outcomes in TS throughout the lifespan. Objective To evaluate the success of our TS transition service, focussing on evaluating established follow-up after transfer to adult services. Methods Girls attending the TS Transition clinic at Royal Hospital for Children Glasgow, 1998–2017, were identified. Attendance data were obtained from patient records and an electronic appointment system. We assessed good and late early attendance in our cohort of TS patients as well as established endocrine follow-up, defined as those still attending adult endocrine services 3 years after transfer. Success of TS transition was determined by the proportion of girls in established endocrine follow-up. Results Forty-six girls (median age 18.3 yrs) were identified. Thirty-six, 36/46 girls transferred prior to 2015 and 26 of those (72%) were in established follow-up at 3 years, 22/36 girls had met with an Adult specialist prior to transfer and 14/36 had not met with an adult specialist prior to transfer. Twenty-one (80.7%) were good early attenders (p = 0.10). In the early attenders’ cohort, there was no significant difference between those that had and had not met an adult specialist prior to transfer. Conclusion A significant proportion of girls with TS are currently lost to endocrine follow-up following transfer to adult clinics. Early attendance at an adult clinic appears to predict established long-term follow-up. Strategies to improve early attendance and long-term endocrine follow-up are needed to ensure lifelong health needs are addressed.

Differences in Health Care Transition Views, Practices, and Barriers Amongst North American Pediatric Rheumatology Clinicians from 2010 to 2018

Objective Since 2010, the rheumatology community has developed guidelines and tools to improve healthcare transition . In this study we aimed to compare current transition practices and beliefs among Childhood Arthritis and Rheumatology Research Alliance (CARRA) rheumatology providers with transition practices from a 2010 provider survey published by Chira et al. Methods In 2018, CARRA members completed a 25-item online survey about healthcare transition. Got Transition’s™ Current Assessment of Health Care Transition Activities was used to measure clinical transition processes on a scale of 1 (basic) to 4 (comprehensive). Bivariate analyses were used to compare 2010 and 2018 survey findings. Results Over half of CARRA members completed the survey (217/396), including pediatric rheumatologists, adult- and pediatric-trained rheumatologists, pediatric rheumatology fellows, and advanced practice providers. The most common target age to begin transition planning was 15-17 (49%). Most providers transferred patients prior to age 21 or older (75%). Few providers used the American College of Rheumatology transition tools (31%) or have a dedicated transition clinic (23%). Only 17% had a transition policy in place, and 63% did not consistently address healthcare transition with patients. When compared to the 2010 survey, improvement was noted in three of twelve transition barriers: availability of adult primary care providers, availability of adult rheumatologists, and pediatric staff transition knowledge and skills (p<0.001 for each). Nevertheless, the mean Current Assessment score was less than 2 for each measurement. Conclusion This study demonstrates improvement in certain transition barriers and practices since 2010, although implementation of structured transition processes remains inconsistent.