A Nephrology Pediatric to Adult Transition Clinic: A Pilot Program

Nishi, Laura; Langman, Craig B.; Ghossein, Cybele

doi:10.1016/j.xkme.2019.07.012

Cited by 5 publications

(12 citation statements)

References 9 publications

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“…HCT programs have been developed for AYAs with other chronic illnesses, such as IBD, 21 liver transplantation, 12 heart failure, 22 sickle cell disease, 23 and chronic kidney disease. 24 Currently, there is no Transfer of care occurs during adolescence and young adulthood, a time that is in general associated with higher rates of mortality, substance abuse, and mental health issues. 25 This difficult and vulnerable period is compounded in the SBS/IF population by the burden of a serious health condition.…”

Section: Challenges In Establishing Hct Programs In Sbs/if Populationmentioning

confidence: 99%

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Optimizing transition from pediatric to adult care in short bowel syndrome and intestinal failure

Kinberg

Verma

Kaura

et al. 2023

J Parenter Enteral Nutr

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As the majority of children with short bowel syndrome (SBS) and intestinal failure (IF) are now surviving into adulthood, there is a paradigm shift from short‐term management to long‐term outcomes and a growing need to focus on healthcare transition (HCT). It is imperative that adolescents and young adults with SBS and IF receive disease education, empowerment, and support as they navigate the transition from pediatric to adult care. Furthermore, both pediatric and adult healthcare providers who manage these patients should be aware of the challenges faced by this population, barriers to their HCT, and strategies to overcome them. This article reviews the literature on HCT in children with chronic illnesses, discusses barriers to HCT in SBS/IF, identifies the important constituents of the transition process in SBS/IF, and provides recommendations for the successful and smooth transition of the pediatric patient to the adult healthcare environment. Structured and multicomponent HCT programs should become the standard of care to ensure uninterrupted high‐quality care across the life span for patients with SBS/IF.

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Section: Challenges In Establishing Hct Programs In Sbs/if Populationmentioning

confidence: 99%

Section: Challenges In Establishing Hct Programs In Sbs/if Populationmentioning

confidence: 99%

Optimizing transition from pediatric to adult care in short bowel syndrome and intestinal failure

Kinberg

Verma

Kaura

et al. 2023

J Parenter Enteral Nutr

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“…As children affected by kidney disease are fortunately living longer, the number of patients requiring transfer of care from pediatric to adult nephrologists is increasing. [1][2][3][4][5] This transfer usually occurs at or shortly after the age of 18 years. There are major structural differences between child and adultcentered health systems, and attention to these young adult patients may decrease as they become a small proportion of the total patients treated in the adult setting.…”

Section: Purpose Of Programmentioning

confidence: 99%

“…Risk-taking behavior may lead to nonadherence with medications and reduced engagement with health care providers. 1,3,5,6 The pediatric literature suggests that transition is best served by dedicated clinics to teach principles of self-reliance in adolescence prior to transfer. Various recommendations have been proposed to optimize transition care.…”

Section: Purpose Of Programmentioning

confidence: 99%

“…Although labor intensive, this approach, including follow-up reminders for missed visits, has been noted to contribute to successful transition in a prior study. 3 The recent addition of part-time nurse dedicated to the transition clinic not only allowed for assistance with these follow-up tasks and data collection but also served as an appreciated and useful resource to these young patients. A telephone call from the nurse prior to appointments has been suggested to improve patient attendance.…”

Section: Advantages Of the Transition Clinicmentioning

confidence: 99%

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Transition From Pediatric to Adult Nephrology Care: Program Report of a Single-Center Experience

Cybulsky,

Cercena,

Goodyer

et al. 2023

Can J Kidney Health Dis

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Purpose of program: Adolescents and young adults with chronic disease face many personal and systemic barriers that may impede their successful transition from pediatric to adult care, putting them at risk for treatment nonadherence, loss to follow-up, and poor health outcomes. Such barriers include impaired socioemotional functioning, overreliance on adult caregivers, lack of disease-specific knowledge, and poor coordination between pediatric and adult health care services. In 2007, we established a specialized youth to adult nephrology transition clinic at a tertiary care center to address these barriers and provide adolescents and young adults with renal disease followed at the affiliated children’s hospital with a seamless transition to adult care. Sources of information: The attending clinic nephrologist collected data prospectively for this quality improvement report. Methods: The features of this specialized clinic included (1) single point of entry and single triage adult nephrologist, (2) ongoing follow-up with a single adult nephrologist who communicated with the pediatric nephrologists, and (3) a single specialized clinic nurse who provided disease-specific education and helped to ensure ongoing patient engagement and follow-up. Importantly, the transition patients were booked into regular appointment slots in the adult nephrologist’s general clinic, which facilitated regular follow-up without additional resources. The salary of the transition clinic nurse was covered by an unrestricted grant. Patient visits were in-person, except between 2020 and 2021 when visits were by telephone due to the pandemic. Key findings: A total of 213 patients were referred and assessed in the transition clinic from February 2007 until October 2022. Most referrals were from pediatric nephrologists. Among the patients, 29% had a hereditary kidney disease; in 71%, the disease was acquired. The most common disease was glomerulonephritis and ~30% of the patients suffered from a “rare” disease. Of the 213 patients, 123 (58%) continue to be followed up (mean follow-up: 4.8 years), 27 (13%) were transferred to other physicians, in part to accommodate treatment closer to patients’ homes, and 29 (14%) without ongoing care needs were discharged. Only 33 (15%) were lost to follow-up. There were several advantages to the clinic, including the maintenance of accurate records, a process to minimize loss to follow-up, and a “critical mass” of patients with rare diseases, which facilitated development of special expertise in rare disease pathogenesis, diagnosis, treatment, and management of complications. Patients with glomerulonephritis demonstrated a stable serum creatinine over 3 to 15 years, and morbidity (as reflected by emergency room visits and hospitalizations) was low. Limitations: Due to the relatively small numbers of patients in the disease categories, it was not possible to determine conclusively whether attendance of patients in the transition clinic reduced the rate of progression of kidney disease or morbidity. Implications: A dedicated referral, triage, and follow-up process post-transition with only modest financial resources and personnel can result in accurate tracking of clinic data, as well as consistent and reliable follow-up and expert patient care.

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