253
Views
3
CrossRef citations to date
0
Altmetric
Articles

5-Year Activity and Participation Outcomes of the First Successful Pediatric Bilateral Hand Transplantation: A Case Report

ORCID Icon, , , , &
Pages 663-679 | Received 11 Nov 2021, Accepted 21 Mar 2022, Published online: 04 Apr 2022

References

  • Amaral, S., Kessler, S. K., Levy, T. J., Gaetz, W., McAndrew, C., Chang, B., Lopez, S., Braham, E., Humpl, D., Hsia, M., Ferry, K. A., Xu, X., Elder, D., Lefkowitz, D., Feudtner, C., Thibaudeau, S., Lin, I. C., Kovach, S. J., Schwartz, E. S., … Levin, L. S. (2017). 18-month outcomes of heterologous bilateral hand transplantation in a child: A case report. The Lancet Child & Adolescent Health, 1(1), 35–44. https://doi.org/10.1016/S2352-4642(17)30012-3
  • Amaral, S., & Levin, L. S. (2017). Pediatric and congenital hand transplantation. Current Opinion in Organ Transplantation, 22(5), 477–483. https://doi.org/10.1097/mot.0000000000000453
  • Biddiss, E., & Chau, T. (2007). The roles of predisposing characteristics, established need, and enabling resources on upper extremity prosthesis use and abandonment. Disability and Rehabilitation. Assistive Technology, 2(2), 71–84. https://doi.org/10.1080/17483100601138959
  • Bleyenheuft, C., Wanyama, S., Van Damme, P., Goemans, N., De Bleecker, J., Van Coster, R., De Jonghe, P., Beysen, D., Van den Bergh, P., Paquay, S., Servais, L., Maertens de Noordhout, A., Haan, J., De Meirleir, L., Remiche, G., Deconinck, N., & Arnould, C. (2018). Quantifying the changes in activity level of neuromuscular patients using the ACTIVLIM questionnaire: A 5-years study. Annals of Physical and Rehabilitation Medicine, 61, e541. https://doi.org/10.1016/j.rehab.2018.05.1260
  • Broderick, J. E., DeWitt, E. M., Rothrock, N., Crane, P. K., & Forrest, C. B. (2013). Advances in patient-reported outcomes: The NIH PROMIS® measures. EGEMS (Washington, DC), 1(1), 1015. https://doi.org/10.13063/2327-9214.1015
  • Caplan, A., & Purves, D. (2017). A quiet revolution in organ transplant ethics. Journal of Medical Ethics, 43(11), 797–800. https://doi.org/10.1136/medethics-2015-103348
  • Cooney, C. M., Siotos, C., Aston, J. W., Bello, R. J., Seal, S. M., Cooney, D. S., Shores, J. T., Brandacher, G., & Lee, W. A. (2018). The ethics of hand transplantation: A systematic review. The Journal of Hand Surgery, 43(1), e1-84–84.e15. https://doi.org/10.1016/j.jhsa.2017.08.004
  • Cunningham, N. R., Kashikar-Zuck, S., Mara, C., Goldschneider, K. R., Revicki, D. A., Dampier, C., Sherry, D. D., Crosby, L., Carle, A., Cook, K. F., & Morgan, E. M. (2017). Development and validation of the self-reported PROMIS pediatric pain behavior item bank and short form scale. Pain, 158(7), 1323–1331. https://doi.org/10.1097/j.pain.0000000000000914
  • Daltroy, L. H., Liang, M. H., Fossel, A. H., & Goldberg, M. J. (1998). The POSNA pediatric musculoskeletal functional health questionnaire: Report on reliability, validity, and sensitivity to change. Journal of Pediatric Orthopedics, 18(5), 561–571. https://doi.org/10.1097/00004694-199809000-00001
  • DeLuca, S. C., Echols, K., Ramey, S. L., & Taub, E. (2003). Pediatric constraint-induced movement therapy for a young child with cerebral palsy: Two episodes of care. Physical Therapy, 83(11), 1003–1013. https://doi.org/10.1093/ptj/83.11.1003
  • DeWalt, D. A., Gross, H. E., Gipson, D. S., Selewski, D. T., DeWitt, E. M., Dampier, C. D., Hinds, P. S., Huang, I.-C., Thissen, D., & Varni, J. W. (2015). PROMIS(®) pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 24(9), 2195–2208. https://doi.org/10.1007/s11136-015-0953-3
  • DeWitt, E. M., Stucky, B. D., Thissen, D., Irwin, D. E., Langer, M., Varni, J. W., Lai, J.-S., Yeatts, K. B., & DeWalt, D. A. (2011). Construction of the eight-item patient-reported outcomes measurement information system pediatric physical function scales: Built using item response theory. Journal of Clinical Epidemiology, 64(7), 794–804. https://doi.org/10.1016/j.jclinepi.2010.10.012
  • Egermann, M., Kasten, P., & Thomsen, M. (2009). Myoelectric hand prostheses in very young children. International Orthopaedics, 33(4), 1101–1105. https://doi.org/10.1007/s00264-008-0615-y
  • Fink, A., Gebhard, B., Erdwiens, S., Haddenhorst, L., & Nowak, S. (2016). Reliability of the German version of the Children’s Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC). Child: Care, Health and Development, 42(5), 683–691. https://doi.org/10.1111/cch.12360
  • Gaetz, W., Kessler, S. K., Roberts, T. P. L., Berman, J. I., Levy, T. J., Hsia, M., Humpl, D., Schwartz, E. S., Amaral, S., Chang, B., & Levin, L. S. (2018). Massive cortical reorganization is reversible following bilateral transplants of the hands: Evidence from the first successful bilateral pediatric hand transplant patient. Annals of Clinical and Translational Neurology, 5(1), 92–97. https://doi.org/10.1002/acn3.501
  • Gálvez, J. A., Gralewski, K., McAndrew, C., Rehman, M. A., Chang, B., & Levin, L. S. (2016). Assessment and planning for a pediatric bilateral hand transplant using 3-dimensional modeling: Case report. The Journal of Hand Surgery, 41(3), 341–343.
  • Haley, S. (2015). PEDI-CAT (version 1.4. 0): Development, standardization and administration manual. Trustees of Boston University.
  • Haley, S. M., Coster, W. J., Dumas, H. M., Fragala-Pinkham, M., Kramer, J., Ni, P., Tian, F., Kao, Y.-C., Moed, R., & Ludlow, L. H. (2011). Accuracy and precision of the pediatric evaluation of disability inventory computer-adaptive tests (PEDI-CAT) ). Developmental Medicine and Child Neurology, 53(12), 1100–1106. https://doi.org/10.1111/j.1469-8749.2011.04107.x
  • Haley, S. M., Coster, W. J., Dumas, H. M., Fragala-Pinkham, M. A., Moed, R., Kramer, J., Ni, P., Feng, T., Kao, Y.-C., & Ludlow, L. H. (2012). (Version 1.3.6.): PEDI-CAT development, standardization, and administration manual. Trustees of Boston University.
  • Hoare, B., & Greaves, S. (2017). Unimanual versus bimanual therapy in children with unilateral cerebral palsy: Same, same, but different. Journal of Pediatric Rehabilitation Medicine, 10(1), 47–59. https://doi.org/10.3233/PRM-170410
  • Imms, C. (2008). Review of the children's assessment of participation and enjoyment and the preferences for activity of children. Physical & Occupational Therapy in Pediatrics, 28(4), 389–404. https://doi.org/10.1080/01942630802307135
  • Irwin, D. E., Gross, H. E., Stucky, B. D., Thissen, D., DeWitt, E. M., Lai, J. S., Amtmann, D., Khastou, L., Varni, J. W., & DeWalt, D. A. (2012). Development of six PROMIS pediatrics proxy-report item banks. Health and Quality of Life Outcomes, 10, 22. https://doi.org/10.1186/1477-7525-10-22
  • Jongbloed-Pereboom, M., Nijhuis-van der Sanden, M. W., & Steenbergen, B. (2013). Norm scores of the box and block test for children ages 3-10 years. The American Journal of Occupational Therapy: Official Publication of the American Occupational Therapy Association, 67(3), 312–318. https://doi.org/10.5014/ajot.2013.006643
  • King, G., Law, M., King, S., Hurley, P., Hanna, S., Kertoy, M., Rosenbaum, P., & Young, N. (2004). Children's assessment of participation and enjoyment (CAPE) and preferences for activities of children (PAC). Harcourt Assessment.
  • Krenz, U., Timmermann, D., Gorbunova, A., Lendt, M., Schmidt, S., & von Steinbuechel, N. (2021). Health-related quality of life after pediatric traumatic brain injury: A qualitative comparison between children's and parents' perspectives. PLoS One, 16(2), e0246514 https://doi.org/10.1371/journal.pone.0246514
  • Kubiak, C. A., Etra, J. W., Brandacher, G., Kemp, S. W., Kung, T. A., Lee, W. A., & Cederna, P. S. (2019). Prosthetic rehabilitation and vascularized composite allotransplantation following upper limb loss. Plastic and Reconstructive Surgery, 143(6), 1688–1701. https://doi.org/10.1097/PRS.0000000000005638
  • Law, M., Baptiste, S., McColl, M., Opzoomer, A., Polatajko, H., & Pollock, N. (1990). The Canadian occupational performance measure: An outcome measure for occupational therapy. Can J Occup Ther, 57(2), 82–87. https://doi.org/10.1177/000841749005700207
  • Levin, L. S., Severance, G., Levy, T. L., Mendenhall, S. D., & Walsh, L. (2021). Hand and upper extremity transplantation: surgical and therapy management. In T. M. Skirven, A. L. Osterman, J. Fedorczyk, P. C. Amadio, S. Felder, & E. K. Shin (Eds.), Rehabilitation of the hand and upper extremity (7th ed., pp. 1113–1125). Elsevier.
  • Longo, E., Badia, M., Orgaz, B., & Verdugo, M. (2014). Cross-cultural validation of the Children’s Assessment of Participation and Enjoyment (CAPE) in Spain. Child: Care, Health and Development, 40(2), 231–241. https://doi.org/10.1111/cch.12012
  • Mathiowetz, V., Federman, S., & Wiemer, D. (1985a). Box and block test of manual dexterity: Norms for 6–19 year olds. Canadian Journal of Occupational Therapy, 52(5), 241–245. https://doi.org/10.1177/000841748505200505
  • Mathiowetz, V., Volland, G., Kashman, N., & Weber, K. (1985). Adult norms for the box and block test of manual dexterity. American Journal of Occupational Therapy, 39(6), 386–391. https://doi.org/10.5014/ajot.39.6.386 https://doi.org/10.1177/000841749005700207
  • Mathiowetz, V., Weber, K., Kashman, N., & Volland, G. (1985b). Adult norms for the nine hole peg test of finger dexterity. The Occupational Therapy Journal of Research, 5(1), 24–38. https://doi.org/10.1177/153944928500500102
  • Mendenhall, S. D., Brown, S., Ben-Amotz, O., Neumeister, M. W., & Levin, L. S. (2020). Building a hand and upper extremity transplantation program: Lessons learned from the first 20 years of vascularized composite allotransplantation. Hand (New York, N.Y.), 15(2), 224–233. https://doi.org/10.1177/1558944718790579
  • Momeni, A., Chang, B., & Levin, L. S. (2016). Technology and vascularized composite allotransplantation (VCA)—lessons learned from the first bilateral pediatric hand transplant. Journal of Materials Science: Materials in Medicine, 27(11), 1–6. https://doi.org/10.1007/s10856-016-5771-9
  • Northwestern University. (2022). HealthMeasures Available from: http://www.healthmeasures.net/.
  • Schneeberger, S., Khalifian, S., & Brandacher, G. (2013). Immunosuppression and monitoring of rejection in hand transplantation. Techniques in Hand & Upper Extremity Surgery, 17(4), 208–214. https://doi.org/10.1097/BTH.0000000000000019
  • Shores, J. T., Brandacher, G., & Lee, W. A. (2015). Hand and upper extremity transplantation: An update of outcomes in the worldwide experience. Plastic and Reconstructive Surgery, 135(2), e351-360–360e. https://doi.org/10.1097/PRS.0000000000000892
  • Shores, J. T., Malek, V., Lee, W. A., & Brandacher, G. (2017). Outcomes after hand and upper extremity transplantation. Journal of Materials Science. Materials in Medicine, 28(5), 72–80. https://doi.org/10.1007/s10856-017-5880-0
  • Sims, T., Donovan-Hall, M., & Metcalf, C. (2020). Children’s and adolescents’ views on upper limb prostheses in relation to their daily occupations. British Journal of Occupational Therapy, 83(4), 237–245. https://doi.org/10.1177/0308022619865179
  • Slomine, B. (2011). Functional independence measure for children. In J. S. Kreutzer, J. DeLuca, & B. Caplan (Eds.), Encyclopedia of clinical neuropsychology. Springer. https://doi.org/10.1007/978-0-387-79948-3_1607
  • Snyder, K. J. G., Amaral, S., Kessler, S., Lefkowitz, D., Levy, T. J., Hewlett, J., Levin, S., & Feudtner, C. (2021). Pediatric hand transplantation: A decision analysis. Hand (New York, N.Y.), 16(6), 731–740. https://doi.org/10.1177/1558944719890041
  • Sterr, A., Freivogel, S., & Schmalohr, D. (2002). Neurobehavioral aspects of recovery: Assessment of the learned nonuse phenomenon in hemiparetic adolescents. Archives of Physical Medicine and Rehabilitation, 83(12), 1726–1731. https://doi.org/10.1053/apmr.2002.35660
  • Tintle, S. M., Potter, B. K., Elliott, R. M., & Levin, L. S. (2014). Hand transplantation. JBJS Reviews, 2(1), 1–9. https://doi.org/10.2106/JBJS.RVW.M.00063
  • Tintle, S. M., Tulsky, D., Levin, L. S., Tyner, C. E., Slotkin, J., Dearth, C. L., Horan, A. D., Dooley, M. E., Husson, E., & Kisala, P. A. (2019). Toward the development of patient-reported outcome measures for vascularized composite allotransplantation of the hand. Poster Presented at the Military Health System Research Symposium, Kissimmee, Florida.
  • Turner-Stokes, L. (2009). Goal attainment scaling (GAS) in rehabilitation: A practical guide. Clinical Rehabilitation, 23(4), 362–370. https://doi.org/10.1177/0269215508101742
  • Tyner, C. E., Slotkin, J., Dearth, C. L., Tintle, S. M., Levin, L. S., & Tulsky, D. S. (October, (2019). Health-related quality of life after hand transplantation: Preliminary analysis from focus groups of multi-disciplinary transplantation team members. Poster Presented at the 26th Annual Conference of the International Society for Quality of Life Research (ISOQOL), San Diego, California. https://doi.org/10.1177/0269215508101742
  • Uniform Data System for Medical Rehabilitation. (2016). The WeeFIM II® clinical guide, version 6.4. buffalo: uds uniform data system for medical rehabilitation. 2016. The WeeFIM ii® clinical guide, version 6.4. UDSMR.
  • Upton, P., Lawford, J., & Eiser, C. (2008). Parent-child agreement across child health-related quality of life instruments: A review of the literature. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 17(6), 895–913. https://doi.org/10.1007/s11136-008-9350-5
  • Vandervelde, L., Van den Bergh, P. Y., Goemans, N., & Thonnard, J.-L. (2007). ACTIVLIM: A Rasch-built measure of activity limitations in children and adults with neuromuscular disorders. Neuromuscular Disorders: NMD, 17(6), 459–469. https://doi.org/10.1016/j.nmd.2007.02.013
  • Varni, J. W., Magnus, B., Stucky, B. D., Liu, Y., Quinn, H., Thissen, D., Gross, H. E., Huang, I.-C., & DeWalt, D. A. (2014). Psychometric properties of the PROMIS ® pediatric scales: Precision, stability, and comparison of different scoring and administration options. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 23(4), 1233–1243. https://doi.org/10.1007/s11136-013-0544-0
  • Waljee, J. F., Carlozzi, N., Franzblau, L. E., Zhong, L., & Chung, K. C. (2015). Applying PROMIS to assess upper extremity function among children with congenital hand differences. Plastic and Reconstructive Surgery, 136(2), e200-207. https://doi.org/10.1097/PRS.0000000000001444
  • Wang, Y.-C., Bohannon, R. W., Kapellusch, J., Garg, A., & Gershon, R. C. (2015). Dexterity as measured with the 9-hole peg test (9-HPT) across the age span. Journal of Hand Therapy: Official Journal of the American Society of Hand Therapists, 28(1), 53–60. https://doi.org/10.1016/j.jht.2014.09.002
  • World Health Organization. (2007). International classification of functioning, disability, and health: children & youth version: ICF-CY. World Health Organization.
  • Zipf, G. K. (1949). Human behavior and the principle of least effort: An introduction to human ecology. Addison-Wesley Press.
  • Zuo, K. J., Gold, A., Shaul, R. Z., Ho, E. S., Borschel, G. H., & Zuker, R. M. (2020). Pediatric upper extremity vascularized composite allotransplantation—progress and future. Current Transplantation Reports, 7(4), 260–269. https://doi.org/10.1007/s40472-020-00297-9

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.