The Development of the Evidence-Informed “OI Splint Kit” for Children with Osteogenesis Imperfecta and Their Families
Background: Children with osteogenesis imperfecta (OI) live in fear of fracturing a bone. As fractures are unpredictable, there is a need for tools and knowledge to immobilize a fracture during emergencies. Inspired by a patient recognized in their local OI community for fracture management, the aim of this patient-initiated project was to establish best practices for the safe handling of fractures, including the creation of an evidence-informed OI Splint Kit.
Methods: A systematic review of the literature was conducted to identify kits and tools used to immobilize fractures during emergencies. An expert Task Force consisting of patients, clinicians, and decision makers was conjured to review the synthesized results. Priorities were delineated and a timeline was established to create the OI Splint Kit. The prototype underwent iterative cycles of modifications based on feedback from the Task Force.
Results: Four electronic data bases were searched (Medline, CINHAL, PsychInfo, and Scopus), revealing zero publications pertaining to kits for fracture immobilization. The Task Force used their clinical expertise and patient experiences to develop the OI Splint Kit. The following items were included: splinting tools, bilingual educational material, instructional cards, video tutorials, and a memory card game.
Conclusion: A gap remains in validated kits to assist in fracture immobilization during emergencies. A tangible and practical OI Splint Kit was developed to fulfill this need, based on inter-professional clinical expertise and patient experiential knowledge. The kit is subject to rigorous testing and ongoing quality evaluations, ensuring it will be suitable for use in various contexts.
- Marini JC, Forlino A, Bächinger HP, Bishop NJ, Byers PH, De Paepe A, et al. Osteogenesis imperfecta. Nat Rev Dis Primers. 2017 Aug;3(17052). https://doi.10.1038/nrdp.2017.52
- Tsimicalis A, Denis-Larocque G, Michalovic A, Lepage C, Williams K, Yao T-R, et al. The psychosocial experience of individuals living with osteogenesis imperfecta: a mixed-methods systematic review. Qual Life Res. 2016 Aug;25(8):1877-96. https://doi.10.1007/s11136-016-1247-0
- Hill CL, Baird WO, Walters SJ. Quality of life in children and adolescents with Osteogenesis Imperfecta: a qualitative interview based study. Health Qual Life Outcomes. 2014 Apr 16;12:54. https://doi.10.1186/1477-7525-12-54
- Dahan-Oliel N, Oliel S, Tsimicalis A, Montpetit K, Rauch F, Dogba MJ.
- Quality of life in osteogenesis imperfecta: A mixed-methods systematic review. Am J Med Genet A. 2016 Jan;170A(1):62-76. https://doi.10.1002/ajmg.a.37377
- Dogba MJ, Bedos C, Durigova M, Montpetit K, Wong T, Glorieux F, et al. The impact of severe osteogenesis imperfecta on the lives of young patients and their parents - a qualitative analysis. BMC Pediatr. 2013 Sep 30;13:153. https://doi.10.1186/1471-2431-13-153
- Jeong S, Chougui K, Mercier C, Wong T, Lafrance M-E, Gagnon V, et al. Development of The Good2Go MyHealth Passport for Individuals With Osteogenesis Imperfecta: A Knowledge Synthesis Study. Int J Orthop Trauma Nurs . 2019 May;33:27-34. https://doi.10.1016/j.ijotn.2018.11.005
- Castro AR, Marinello J, Chougui K, Morand M, Bilodeau C, Tsimicalis A. The day‐to day experiences of caring for children with Osteogenesis Imperfecta: A qualitative descriptive study. J Clin Nurs. 2020 Aug;29(15-16):2999-3011. https://doi. J Clin Nurs. 2020 Aug;29(15-16):2999-3011. https://doi.org/10.1111/jocn.15310
- Leclair A. EXCLUSIVE: Saskatchewan boy creates splint kit for fellow patients at Shriners Hospital for Children. Global News [Internet]. 2018 Mar 2017 [cited 2021 May 13]. Available from: https://globalnews.ca/news/4068922/exclusive-saskatchewan-boy-creates-splint-kit-for-fellow-patients-at-montreal-shiners-hospital/
- Carrier J, Siedlikowski M, Thorstad K, Michalovic A, Lafrance M-E, Wong T, et al. A Best Practice Initiative to Optimize Transfer of Young Adults with Osteogenesis Imperfecta from Child to Adult Healthcare Services. Clin Nurse Spec. Nov/Dec 2018;32(6):323-335. https://doi.10.1097/NUR.0000000000000407
- Trejo P, Rauch F. Osteogenesis imperfecta in children and adolescents—new developments in diagnosis and treatment. Osteoporos Int. 2016 Dec;27(12):3427-3437. https://doi.10.1007/s00198-016-3723-3.
- Thorstad K, Keith J, editors. Transforming Care: Implementing FOCUSED™ – A System-wide practice model: Proceedings of the Annual American Organization of Nurse Executives conference; 2019 Apr; San Diego, CA, United States.
- The Canadian Encyclopedia [Internet]. Toronto (ON): Historica Canada; 2006. Medicine Bundles; [updated 2019 Nov 15; cited 2021 May 13]; [4 pages]. Available from: https://thecanadianencyclopedia.ca/en/article/medicine-bundles
- Johnson & Johnson. From 1888 to 2013: Celebrating the 125th Birthday of the First Aid Kit [Internet]. New Brunswick (NJ): Johnson & Johnson Services Inc.; 2013 Jun 21 [cited 2021 May 13]. Available from: https:// https://kilmerhouse.com/2013/06/from-1888-to-2013-celebrating-the-125th-birthday-of-the-first-aid-kit
- Ballard A, Le May S, Khadra C, Fiola JL, Charette S, Charest M-C, et al. Distraction Kits for Pain Management of Children Undergoing Painful Procedures in the Emergency Department: A Pilot Study. Pain Manag Nurs. 2017 Dec;18(6):418-426. https://doi.10.1016/j.pmn.2017.08.001.
- Coffin PO, Santos GM, Matheson T, Behar E, Rowe C, Rubin T, et al. Behavioral intervention to reduce opioid overdose among high-risk persons with opioid use disorder: A pilot randomized controlled trial. PLoS One. 2017 Oct 19;12(10):e0183354. https://doi.10.1371/journal.pone.0183354
- Madzima TR, Vahabi M, Lofters A. Emerging role of HPV self-sampling in cervical cancer screening for hard-to-reach women: focused literature review. Can Fam Physician. 2017 Aug;63(8):597-601.
- Freeman M, Stewart D, Shimmell L, Missiuna C, Burke‐Gaffney J, Jaffer S, et al. Development and evaluation of The KIT: Keeping It Together™ for Youth (the 'Youth KIT') to assist youth with disabilities in managing information. Child Care Health Dev. 2015 Mar;41(2):222-9. https://doi.0.1111/cch.12199
- Starr SR, Roberts TT, Fischer PR. Osteogenesis Imperfecta: Primary Care. Pediatr Rev. 2010 Aug;31(8):e54-64. https://doi.10.1542/pir.31-8-e54.
- Nghiem T, Louli J, Treherne SC, Anderson CE, Tsimicalis A, Lalloo C, et al. Pain Experiences of Children and Adolescents With Osteogenesis Imperfecta: An Integrative Review. Clin J Pain. 2017 Mar;33(3):271-280. https://doi.10.1097/AJP.0000000000000395
- Nghiem T, Chougui K, Michalovic A, Lalloo C, Stinson J, Lafrance M-E, et al. Pain experiences of adults with osteogenesis imperfecta: An integrative review. Can J Pain. 2018 Jan;2(1):9-20. https://doi.org/10.1080/24740527.2017.1422115
- 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. May/Jun 2020;34(3):99-106. https://doi.10.1097/NUR.0000000000000517.
- Wang YW, Carnevale F, Ezcurra M, Chougui K, Bilodeau C, Siedlikowski S, et al. The Moral Experiences of Children with Osteogenesis Imperfecta. J Child Health Care. Forthcoming 2021.
- Pomey M-P, Hihat H, Khalifa M, Lebel P, Néron A, Dumez V. Patient partnership in quality improvement of healthcare services: Patients’ inputs and challenges faced. Patient Exp J. 2015 Apr;2(1); https://doi.10.35680/2372-0247.1064
- Pomey M-P, Ghadiri DP, Karazivan P, Fernandez N, Clavel N. Patients as partners: a qualitative study of patients’ engagement in their health care. PLoS One. 2015 Apr;10(4):e0122499. https://doi:10.1371/journal.pone.0122499
Download data is not yet available.