Transition From Pediatric to Adult Care by Young Adults With Chronic Granulomatous Disease: The Patient's Viewpoint

Abstract

Purpose Children with chronic illnesses are living longer, prompting health care provider attention to the transition from pediatric to adult care. Transition of care is successful when youth are independent in managing their health. The aims of this study were to identify the strengths and barriers to transition from pediatric to adult care and to determine strategies that could enhance the transition process. Methods A survey was administered via a structured interview to 33 young adult participants (19 to 27 years of age), living with Chronic Granulomatous Disease (CGD) all of whom transitioned from pediatric to adult care. The participants were predominately male (88%) and Caucasian (73%). Topics covered in the survey included understanding of disease and treatment, adherence, advance care planning, and barriers to transition. Data was analyzed using a conventional content analysis approach. Results Seventy-six percent of the participants did not understand their disease process and only fifty percent understood their prophylactic medication regimen. Seventy-five percent of participants perceived their transition as uneventful. Ninety-four percent were independent in self-management skills such as making appointments and ninety percent in refilling prescriptions. More than half of the participants thought that the transition process needed improvement. Specific suggestions to create a practical approach to transition were offered. Conclusions Gaps in disease-related knowledge and transition planning were identified by adolescents and young adults living with CGD. The findings suggest the need for enhancing the transition process utilizing interdisciplinary collaboration to develop a transition policy and program.

Improving the transition from paediatric to adult healthcare: a scoping review on the recommendations of young adults with lived experience

“…A table summarising the studies' major areas of recommendations is presented in table 3 with full citations presented in online supplemental appendix 2. [47][48][49][50][51][52][53][54][55][56][57][58][59][60][61][62][63][64]…”

“…53 Another participant said, 'Have the doctor tell parents to talk to their kids at age 15 or 16 [about beginning the transition process communications]' (p719). 57 Participating in a warm handoff A 'warm handoff' is an in-person interaction with providers, the youth, and their family that occurs during the transfer process from paediatric to adult healthcare. This process is intended to be positive and friendly in nature and can occur in different settings as a bridging technique between paediatric and adult healthcare.…”

“…These individuals and groups are in a position to provide both motivational and informational support, resulting in the development of trusting relationships. [57][58][59] Nurturing relationships with care providers YAs mainly rely on their primary care providers (eg, nurses or physicians) for information and support throughout the transition process. 58 63 Once youth made a connection with an adult care provider, they wished to continue seeing that same provider, to establish a trusting relationship.…”

Pre-Transition Consultations for Adolescents With Chronic Conditions in a General Pediatric Hospital: Lessons Learned

“…Thus, it develops their self-advocacy, making them express their point of view, sometimes for the rst time, concerning all relevant life issues, from CC self-management to intimate issues. In this exercise, putting their CC into words was sometimes di cult because of an insu cient knowledge, a discrepancy between their own representation and medical physiopathology [32] or coping strategies such as avoiding words perceived as too crude. While this was not an obstacle to self-management skills acquisition, using the exact wording of the CC was encouraged to empower adolescents in an adult healthcare setting.…”

Using Implementation Science to Improve Transition for Adolescents and Young Adults with Sickle Cell Disease

“…At the Inner Setting level, the difference between the pediatric care model, where pediatric patients are closely guided, and the adult care model, where patients are expected to be independent, is well acknowledged by previous literature. [20][21][22] There is a clear need for a structured transition program to bridge the gap between these systems, which requires better care coordination and improved provider-provider and patient-provider communication. There was previously only 1 adult hematologist focused on SCD care in our metropolitan area.…”