Expert Commentary (Nursing)
Marianne Légaré1, Analisa Astorino1, Zineb Bouaouina1, Melina Phan1, Yi Wei1
Osteogenesis Imperfecta (OI) Transfer Summary Tool May be Used to Facilitate the Transfer of OI Patients from the Pediatric to Adult Healthcare Systems
Published online: April 22, 2022
1Ingram School of Nursing, McGill University
Corresponding Author: Marianne Légaré, email firstname.lastname@example.org
Carrier J, Siedlikowski M, Chougui K, Plourde S-A, Mercier C, Thevasagayam G, et al. A best practice initiative to optimize transfer of young adults with osteogenesis imperfecta from child to adult healthcare services. Clin Nurse Spec. 2018 Nov/Dec;32(6):323- 35. Available from: https://pubmed.ncbi.nlm.nih.gov/30299335/ doi: 10.1097/NUR.0000000000000407
What happens once youth and young adults with osteogenesis imperfecta (OI) are transferred from the pediatric to the adult healthcare system? To facilitate this process, an interprofessional task force was convened to conduct a knowledge synthesis study, which entailed reviewing the literature, developing guidelines and creating a transfer tool. This study and later research indicate the need for the creation of a transitional care program tailored to the special needs of OI patients and their families.
Tags: Osteogenesis Imperfecta, Transfer tool, Transition, Health care system
Implications for practice and research
- Integrate the use of the OI Transfer Tool to facilitate the transfer of youth and young adults from the pediatric to the adult care health care systems.
- Create a transitional care program to assist patients and families in the transition process and provide adult healthcare practitioners with the key information and tools to care for youth and young adults.
Similar to other young adults with a chronic illness, (2) the transition to the adult healthcare system is complex for youth and young adults with OI who have expressed concerns with their transition. (3) The multi-faceted nature of their rare disease, paucity of evidence of research, and absence of tools to facilitate the transfer further compound the issue. (4) This places these patients at heighten risk for complications. (4) Hence, an interprofessional Task Force with international expertise in OI including patient representation was convened to address the notable gap in the transfer of youth and young adults with OI to the adult health care system.
Carrier et al. led an interprofessional expert task force at a university-affiliated hospital with international expertise in OI to: 1) review the literature, 2) develop guidelines, and 3) create a tool to facilitate the transfer of youth and young adults with OI from the pediatric to the adult health care systems. Six electronic databases and varying grey sources—literature not published through traditional means—from the US and Canada were searched. Further contact was made with transition program coordinators in Canada or the United States to retrieve published and unpublished transfer tools. All data were extracted, descriptively summarized, and appraised by the Task Force who had no conflicts of interest.
Carrier et al (2018) reported a paucity of research in this area. After a comprehensive literature review, only 7 studies were identified. Eight transfer tools were retrieved and descriptively summarized. Together, with the paucity of evidence, the Task Force relied on their interprofessional expertise in OI to create the “OI Transfer Summary” tool. This tool comprised 11 sections summarizing the care given in the pediatric health care system, and the follow-up requirements. Therefore, a whole overview of the patient is presented to the new caregivers and offers a starting point for the provision of individualized primary care in the adult health care system.
Transferring from pediatric to adult systems may be a challenging event in lives of youth and young adults with OI. (3) To date, clinicians and researchers support the creation of a transitional care program to guide youth and young adults with OI and their families to the adult health system. (3) This program would furthermore support the clinicians in the adult sector to receive the transfer and attend to their health care needs. (3) The OI Transfer Summary tool, along other existing OI passports, (5, 6) may be incorporated into such a program to offer personalized care and optimize communication between transfers. (7, 8) Derived from existing transitional care programs, (9, 10) this program may include emphasis on familiarizing patients with the adult system, such as preparing for adult care provider appointments, visiting clinics and precocious preparation, and including peer mentorship. (3, 8, 9, 11) The OI Transfer Tool would serve as a gateway to facilitate the discussion of these items as the patient completes it in collaboration with the interprofessional team. Moreover, the tool may help prompt educating patients on their responsibilities and assessing for their transfers readiness, (12) which collectively may ease the transition process. However, further research is needed as this tool has not yet been evaluated in practice, and the outcomes of using such a tool are unknown. Nevertheless, ideal practices suggest that bridging the transition process and optimizing the knowledge gap among adult healthcare professionals, a transfer coordinator, and integration of technology could be used to educate and facilitate their access to resources in person and online. (13)
- Carrier J, Siedlikowski M, Chougui K, Plourde S-A, Mercier C, Thevasagayam G, et al. A best practice initiative to optimize transfer of young adults with osteogenesis imperfecta from child to adult healthcare services. Clin Nurse Spec. 2018 Nov/Dec;32(6):323-35. Available from: https://pubmed.ncbi.nlm.nih.gov/30299335/ doi: 10.1097/NUR.0000000000000407
- Jensen PT, Paul GV, LaCount S, Peng J, Spencer CH, Higgins GC, et al. Assessment of transition readiness in adolescent and young adults with chronic health conditions. Pediatr Rheumatol. 2017 Sep;15(70). Available from: https://ped-rheum.biomedcentral.com/articles/10.1186/s12969-017-0197-6 doi: 10.1186/s12969-017-0197-6
- Michalovic A, Anderson C, Thorstad K, Rauch F, Tsimicalis A. Exploring the perceived self-management needs of young adults with osteogenesis imperfecta. Clin Nurse Spec. 2020 May/Jun;34(3):99-106. Available from: https://pubmed.ncbi.nlm.nih.gov/32250991/ doi: 10.1097/NUR.0000000000000517
- Chougui K, Addab S, Palomo T, Morin SN, Veilleux L, Bernstein M, et al. Clinical manifestations of osteogenesis imperfecta in adulthood: an integrative review of quantitative studies and case reports. Am J Med Genet A. 2020 Apr;182(4):842-865. Available from: https://pubmed.ncbi.nlm.nih.gov/32091187/ doi: 10.1002/ajmg.a.61497
- Jeong S, Chougui K, Mercier C, Wong T, Lafrance M, Gagnon V et al. Development of the Good2Go MyHealth passport for individuals with osteogenesis imperfect: a knowledge-synthesis study. Int J Orthop Trauma Nurs. 2019 May;33:27-34. Available from: https://pubmed.ncbi.nlm.nih.gov/30910468/ doi: 10.1016/j.ijotn.2018.11.005
- OIFE [Internet]. Europe: OIFE; 2021. OIFE passport; 2021 [2021 Mar 24]; [about 4 screens]. Available from: https://oife.org/news-resources/oife-passport/
- Gray WN, Schaefer MR, Resmini-Rawlinson A, Wagoner ST. Barriers to transition from pediatric to adult care: a systematic review. J Pediatr Psychol. 2018 Jun;43(5):488-502. Available from: https://pubmed.ncbi.nlm.nih.gov/29190360/ doi: 10.1093/jpepsy/jsx142
- Shapiro JR, Germain-Lee, EL. Osteogenesis imperfecta: effecting the transition from adolescent to adult medical care. JMuskulskelet Neronal Interact. 2021 Mar;12(1):24-7. Available from: https://pubmed.ncbi.nlm.nih.gov/22373948/
- Gogba MJ, Rauch F, Wong T, Ruck J, Glorieux F, Bedos C. From pediatric to adult care: strategic evaluation of a transition program for patients with osteogenesis imperfecta. BMC Health Serv Res. 2014 Oct 31;14:489. Available from: https://pubmed.ncbi.nlm.nih.gov/25366588/ doi: 10.1186/s12913-014-0489-1
- Marani H, Fujioka J, Tabatabavakili S, Bollegala N. Systematic narrative review of pediatric-to-adult care transition models for youth with pediatric-onset chronic conditions. Child Youth Serv Rev. 2020 Nov;118:105415. Available from: https://www.sciencedirect.com/science/article/pii/S0190740920308501 doi:10.1016/j.childyouth.2020.105415
- Schmidt A, Ilango SM, McManus MA, Rogers KK, White PH. Outcomes of paediatric to adult health care transition interventions: an updated systematic review. K Pediatr Nurs. Mar-Apr 2020;51:92-107. Available from: https://pubmed.ncbi.nlm.nih.gov/31981969/ doi: 10.1016/j.pedn.2020.01.002
- Stinson J, Kohut SA, Spiegel L, White M, Gill N, Colbourne G et al. A systematic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness. Int J Adolesc Med Health. 2013 Jul;26(2):159-174. Available from: https://www.degruyter.com/document/doi/10.1515/ijamh-2013-0512/html doi: 10.1515/ijamh-2013-0512
- Castro AR, Chougui K, Bilodeau C, Tsimicalis A. Exploring the views of osteogenesis imperfect caregivers on internet-based technologies: qualitative descriptive study. J Med Internet Res 2019 Dec;21(12):e15924. Available from: https://www.jmir.org/2019/12/e15924 doi: 10.2196/15924
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.