Wilson, G. N. (1998). In H. JA, & J. Birch (Eds.), Heritable limb deficiencies, (pp. 39–51). Rosemont, IL.
Guichet, J.-M., Spivak, J. M., Trouilloud, P., & Grammont, P. M. (1991). Lower Limb-Length Discrepancy. An Epidemiologic Study. Clinical Orthopaedics and Related Research, 272, 235–241.
Canfield, M. A., Honein, M. A., Yuskiv, N., Xing, J., Mai, C. T., Collins, J. S., et al. (2006). National estimates and race/ethnic-specific variation of selected birth defects in the United States, 1999–2001. Birth Defects Research Part A - Clinical and Molecular Teratology, 76, 747–756.
Public Health Infobase. Public Health Agency of Canada. [Internet]. Congenit. Anomalies Canada 2017; Available from: https://health-infobase.canada.ca/congenital-anomalies/data-tool.
Boakes, J. L., Stevens, P. M., & Moseley, R. F. (1991). Treatment of genu valgus deformity in congenital absence of the fibula. Journal of pediatric orthopedics, 11, 721–724.
Article
CAS
PubMed
Google Scholar
Coventry, M. B., & Johnson, E. W. (1952). Congenital absence of the fibula. The Journal of bone and joint surgery. American volume, 34(A), 941–955.
Article
PubMed
Google Scholar
Froster, U. G., & Baird, P. A. (1993). Congenital defects of lower limbs and associated malformations: A population based study. American journal of medical genetics, 45, 60–64.
Article
CAS
PubMed
Google Scholar
Rogala, E. J., Wynne-Davies, R., & Littlejohn, A. (1974). Congenital limb anomalies: Frequency and aetiological factors. Data from the Edinburgh register of the newborn (1964-68). Journal of medical genetics, 11, 221–223.
Article
CAS
PubMed
PubMed Central
Google Scholar
Paley, D. (2016). Tibial hemimelia: new classification and reconstructive options. Journal of Children’s Orthopaedics. Springer Verlag, 10, 529–555.
Brown, F. W. (1971). The brown operation for total hemimelia tibia. In G. T. Aitken (Ed.), Selected lower limb anomalies National Academy of Sciences. Washington DC, (pp. 20–28).
Google Scholar
Setoguchi, Y., & Rosenfelder, R. (1982). The limb deficient child. Thomas, editor. Springfield, IL.
Google Scholar
Cadman, D., Boyle, M., Szatmari, P., & Offord, D. R. (1987). Chronic Illness, Disability, and Mental and Social Well-Being: Findings of the Ontario Child Health Study, 79, 805–813 Available from: http://pediatrics.aappublications.org/content/79/5/805.abstract.
Michielsen, A., Van Wijk, I., & Ketelaar, M. (2010). Participation and quality of life in children and adolescents with congenital limb deficiencies: A narrative review. Prosthetics and orthotics international.
Michielsen, A., Van Wijk, I., & Ketelaar, M. (2011). Participation and health-related quality of life of Dutch children and adolescents with congenital lower limb deficiencies. Journal of rehabilitation medicine, 43(19), 584–589.
Article
PubMed
Google Scholar
Varni, J. W. P. D., & Setoguchi, Y. M. D. (1991). Correlates of perceived physical appearance in children with congenital/acquired limb deficiencies. Journal of developmental and behavioral pediatrics : JDBP, 12(3), 171–176.
Article
CAS
PubMed
Google Scholar
Hrutkay, J. M., & Eilert, R. E. (1990). Operative lengthening of the lower extremity and associated psychological aspects: The Children’s hospital experience. Journal of pediatric orthopedics, 10, 373–377.
Article
CAS
PubMed
Google Scholar
Ghoneem, H. F., Wright, J. G., Cole, W. G., & Rang, M. (1996). The Ilizarov method for correction of complex deformities. The Journal of bone and joint surgery. American volume, 78, 1480–1485.
Article
CAS
PubMed
Google Scholar
Ramaker, R. R., Lagro, S. W., van Roermund, P. M., & Sinnema, G. (2000). The psychological and social functioning of 14 children and 12 adolescents after Ilizarov leg lengthening. Acta orthopaedica Scandinavica, 71(1), 55–59.
Article
CAS
PubMed
Google Scholar
Montpetit, K., Hamdy, R. C., Dahan-oliel, N., Zhang, X., Narayanan, U. G., & Frcs, C. (2009). Measurement of health-related quality of life in children undergoing external fixator treatment for lower limb deformities. Journal of pediatric orthopedics, 29(8), 920–926.
Article
PubMed
Google Scholar
Sakkers, R., & van Wijk, I. (2016). Amputation and rotationplasty in children with limb deficiencies: current concepts. Journal of Children’s Orthopaedics. Springer Verlag, 10, 619–626.
World Bank. Specialist surgical workforce (per 100,000 population). 2018. https://data.worldbank.org/indicator/SH.MED.SAOP.P5?end=2018&start=2018&view=map.
Google Scholar
Naudie, D., Hamdy, R. C., Fassier, F., Morin, B., & Duhaime, M. (1997). Management of Fibular Hemimelia: Amputation or Limb Lengthening. The Journal of bone and joint surgery. British volume, 79.
Aiona, M. (2014). See you in the paralympics in 2022. Journal of Bone and Joint Surgery - American Volume. Journal of Bone and Joint Surgery Inc, 96, e173.
De, B. G., Aldegheri, R., Renzi-Brivio, L., & Trivella, G. (1987). Limb Lengthening by Callus Distraction (Callotasis). Journal of pediatric orthopedics, 7(2) Available from: http://journals.lww.com/pedorthopaedics/Fulltext/1987/03000/Limb_Lengthening_by_Callus_Distraction.2.aspx.
Paley, D. (1990). Problems, obstacles, and complications of limb lengthening by the Ilizarov technique. Clin Orthop Relat Res, 250, 81–104.
Article
Google Scholar
Martin, L., Farrell, M., Lambrenos, K., & Nayagam, D. (2003). Living with the Ilizarov frame: Adolescent perceptions. J Adv Nurs.
Choi IH, Kumar SJ, Bowen JR. Amputation or limb-lengthening for partial or total absence of the fibula. J Bone Jt Surg Am. 1990;72(9):1391–9.
John Birch BG, Walsh SJ, Small JM, Morton A, Koch KD, Smith C, et al. Syme amputation for the treatment of fibular deficiency: An evaluation of long-term physical and psychological functional status. 1999.
Google Scholar
McCarthy, J. J., Glancy, G. L., Chang, F. M., & Eilert, R. E. (2000). Fibular Hemimelia: Comparison of Outcome Measurements After Amputation and Lengthening* [Internet]. Vol. 82, (p. 1732) Available from: http://jbjs.org/jbjsam/82/12/1732.full.pdf.
Google Scholar
Westin, L., Carlson, R., Israelsson, B., Willenheimer, R. C. C., & McNeil, T. F. (1997). Quality of life in patients with ischaemic heart disease: A prospective controlled study, 242, 239–247.
Fernandez-Palazzi (1998). Congenital Defiency of Tibia. JPO.
Google Scholar
Catagni, M. A., Radwan, M., Lovisetti, L., Guerreschi, F., & Elmoghazy, N. A. (2011). Limb lengthening and deformity correction by the Ilizarov technique in type III fibular hemimelia: An alternative to amputation. Clin Orthop Relat Res, 469(4), 1175–1180.
Article
PubMed
Google Scholar
Miller LS. Management of Congenital Fibular Deficiency by Ilizarov Technique. J Pediatr Orthop. 1992;12(5):651–7.
Yadav S. Type-I Tibial Hemimelia_ A Limb-Salvage and Lengthening Technique. JB JS Open Access 2019;4(1).
Hosny, G. A. (2005). Treatment of tibial hemimelia without amputation: Preliminary report [internet]. Journal of Pediatric Orthopaedics B, 14 Available from: https://journals.lww.com/jpo-b. Lippincott Williams & Wilkins.
Catagni, M. (1991). Management of Fibular Hemimelia Using Ilizarov Method. Orthop Clin North Am.
Walker, J. L., Knapp, D., Minter, C., Boakes, J. L., Salazar, J. C., Sanders, J. O., et al. (2009). Adult Outcomes Following Amputation or Lengthening for Fibular Deficiency, 91, 797–804 Available from: http://jbjs.org/jbjsam/91/4/797.full.pdf.
Birch, J. G., Paley, D., Herzenberg, J. E., Morton, A., Ward, S., Riddle, R., et al. (2019 Apr). Amputation versus staged reconstruction for severe fibular Hemimelia. JBJS Open Access, 4(2), e0053.
Article
PubMed
PubMed Central
Google Scholar
Letts M, Vincent N. Congenital Longitudinal Deficiency of the Fibula (Fibular Hemimelia) Parental Refusal of Amputation.
Chhina, H., Klassen, A., Kopec, J., Park, S., Fortes, C., & Cooper, A. (2017). Quality of life of children with lower limb deformities: A systematic review of patient-reported outcomes and development of a preliminary conceptual framework. J Limb Lengthening Reconstr, 3(1), 19–29.
Article
Google Scholar
Chhina, H., Klassen, A., Kopec, J. A., Oliffe, J., & Cooper, A. (2019). International multiphase mixed methods study protocol to develop a patient-reported outcome instrument for children and adolescents with lower limb deformities. BMJ Open, 9(5), 1–8.
Article
Google Scholar
Lasch, K. E., Marquis, P., Vigneux, M., Abetz, L., Arnould, B., Bayliss, M., et al. (2010). PRO development: Rigorous qualitative research as the crucial foundation. Quality of life research, 19(8), 1087–1096 Available from: http://www.jstor.org.ezproxy.library.ubc.ca/stable/40927744.
Article
PubMed
PubMed Central
Google Scholar
Patrick, D. L., Burke, L. B., Gwaltney, C. J., Leidy, N. K., Martin, M. L., Molsen, E., et al. (2011). Content validity - establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: Part 2 - assessing respondent understanding. Value Health., 14(8), 978–988.
Article
PubMed
Google Scholar
Patrick, D. L., Burke, L. B., Gwaltney, C. J., Leidy, N. K., Martin, M. L., Molsen, E., et al. (2011). Content validity—Establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: Part 1—Eliciting concepts for a new PRO instrument. Value Health, 14(8), 967–977.
Article
PubMed
Google Scholar
Bowen, G. (2008). a. Naturalistic inquiry and the saturation concept: A research note. Qual Res, 8(1), 137–152.
Article
Google Scholar
Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic injuiry. In: Volume 75.
Google Scholar
Patton MQ. Enhancing the Quality and Credibility of Qualitative Analysis.
Carter, N., Bryant-Lukosius, D., Dicenso, A., Blythe, J., & Neville, A. J. (2014). The use of triangulation in qualitative research. Vol. 41, Oncology Nursing Forum. Oncology Nursing Society, 545–547.
Thorne, S., Kirkham, S. R., & MacDonald-Emes, J. (1997). Interpretive description: A noncategorical qualitative alternative for developing nursing knowledge. Research in nursing & health, 20(2), 169–177. https://doi.org/10.1002/(SICI)1098-240X(199704)20:2%3C169::AID-NUR9%3E3.0.CO;2-I.
Article
CAS
Google Scholar
Thorne, S., Kirkham, S. R., & MacDonald-Emes, J. (1997). Interpretive description: A noncategorical qualitative alternative for developing nursing knowledge. Research in nursing & health, 20(2), 169–177.
Article
CAS
Google Scholar
Cohen, D. J., & Crabtree, B. F. (2008). Evaluative criteria for qualitative research in health care: Controversies and recommendations. Annals of family medicine.
Sandelowski (1986). Problem of Rigour in Qualitative Research. Advances in nursing science, 8(3).
Guba, E. G., & Lincoln, Y. S. (1981). Effective Evaluation [Internet]. Vol. 100, Principal Leadership, (pp. 16–21) Available from: http://books.google.co.jp/books?id=3fxGAAAAMAAJ.
Google Scholar
Tracy Qualitative Quality Eight Big Tent Criteria for Excellent Qualitative Research. Quality Inquiries . 2010;
Shenton, A. K. (2004). Strategies for ensuring trustworthiness in qualitative research projects. Educ Inf [Internet], 22(2), 63–75. https://doi.org/10.3233/EFI-2004-22201.
Article
Google Scholar
Charmaz Qual Health Res-2004.
Eiser, C., Cool, P., Grimer, R. J., Carter, S. R., Cotter, I. M., Ellis, A. J., et al. (1997). Quality of life in children following treatment for a malignant primary bone tumour around the knee. Sarcoma., 1, 39–45.
Article
CAS
PubMed
PubMed Central
Google Scholar
Eiser, C., Kopel, S., Cool, P., & Grimer, R. (1999). The perceived illness experience scale (PIE): Reliability and validity revisited. Child: care, health and development, 25(3), 179–190.
Article
CAS
Google Scholar
Bekkering, W. P., Vliet Vlieland, T. P. M., Koopman, H. M., Schaap, G. R., Schreuder, H. W. B., Beishuizen, A., et al. (2009). Development of a subjective measure of health-related quality of life in patients who underwent surgery for lower extremity malignant bone tumor. Pediatric blood & cancer, 53, 348–355.
Article
Google Scholar
Bekkering, W. P., Vliet Vlieland, T. P. M., Koopman, H. M., Schaap, G. R., Schreuder, H. W. B., Beishuizen, A., et al. (2010). Quality of life in young patients after bone tumor surgery around the knee joint and comparison with healthy controls. Pediatric blood & cancer, 54(5), 738–745.
Article
Google Scholar
Henderson, E. R., Pepper, A. M., Marulanda, G. A., Millard, J. D., & Letson, G. D. (2010). What is the emotional acceptance after limb salvage with an expandable prosthesis? Clinical orthopaedics and related research, 468, 2933–2938.
Article
PubMed
PubMed Central
Google Scholar
Hillmann, A., Hoffmann, C., Gosheger, G., Krakau, H., & Winkelmann, W. (1999). Malignant tumor of the distal part of the femur or the proximal part of the tibia: endoprosthetic replacement or rotationplasty. Functional outcome and quality-of-life measurements. The Journal of bone and joint surgery. American volume, 81, 462–468.
Article
CAS
PubMed
Google Scholar
Mason, G. E., Aung, L., Gall, S., Meyers, P. A., Butler, R., Krüg, S., et al. (2013). Quality of life following amputation or limb preservation in patients with lower extremity bone sarcoma. Frontiers of Oncology, 3(AUG).
Bekkering WP, Vliet Vlieland TPM, Fiocco M, Koopman HM, Schoones JW, Nelissen RGHH, et al. Quality of life, functional ability and physical activity after different surgical interventions for bone cancer of the leg: A systematic review. Vol. 21, Surgical Oncology. 2012.
Boonstra, A. M., Rijnders, L. J. M., Groothoff, J. W., & Eisma, W. H. (2000). Children with congenital deficiencies or acquired amputations of the lower limbs: Functional aspects, 24, 19–27. https://doi.org/10.1080/03093640008726518.
Johansen, H., Dammann, B., Øinæs Andersen, L., & Andresen, I. L. (2016). Children with congenital limb deficiency in Norway: Issues related to school life and health-related quality of life. A cross-sectional study. Disability & rehabilitation, 38(18), 1803–1810.
Article
Google Scholar
de Jong, I. G. M., Reinders-Messelink, H. A., Janssen, W. G. M., Poelma, M. J., van Wijk, I., & van der Sluis, C. K. (2012). Mixed feelings of children and adolescents with unilateral congenital below elbow deficiency: An online focus group study. PLoS One, 7(6).
Krantz, O., Bolin, K., & Persson, D. (2008). Stigma-handling strategies in everyday life among women aged 20 to 30 with transversal upper limb reduction deficiency. Scandinavian journal of disabilities research, 10(4), 209–226.
Article
Google Scholar
Germain, N., Aballéa, S., & Toumi, M. (2019 Jan). Measuring health-related quality of life in young children: How far have we come? Journal Marketing Access Health Policy, 7(1), 1618661.
Article
Google Scholar
Bevans, K., Riley, A., Moon, J., & Forrest, C. (2010). Conceptual and methodological advances in children reported outcomes measurement expert review of Pharmacoeconomics.
Google Scholar
Oakley, A., Bendelow, G., Barnes, J., Buchanan, M., & Husain, A. N. (1995). PAPERS health and cancer prevention: Knowledge and beliefs ofchildren and young people.
Google Scholar
Piko, B. F., & Bak, J. (2006 Oct). Children’s perceptions of health and illness: Images and lay concepts in preadolescence. Health education research, 21(5), 643–653.
Article
PubMed
Google Scholar
Squires, A. (2009 Feb). Methodological challenges in cross-language qualitative research: A research review. International journal of nursing studies, 46(2), 277–287.
Article
PubMed
Google Scholar