Short summary

Adolescent Idiopathic Scoliosis (AIS) is the most prevalent variant of idiopathic scoliosis, affecting 1-3% of children. Although AIS is a relatively common condition, focus has formerly been in the experiences around surgery, while not addressing long-term perspectives of persons living with AIS. We therefore aim to explore the perspectives of persons living with AIS. This is done by semi-structured interviews of women age 20 - 40 with scoliosis.

Rationale

Scoliosis is defined by a lateral curvature of the spine seen in the frontal plane and is either functional or structural (1, 2). The scoliosis can take on a C- or S-shaped configuration. Adolescent Idiopathic Scoliosis (AIS) is the most prevalent variant of idiopathic scoliosis, affecting 1-3% of children (3, 4). AIS has an uneven gender distribution, primarily affecting girls (5). The etiology of AIS remains largely unknown, although the rotational stability of the upright human spine was shown to be influenced by its biomechanics (6). Adams forward bending test showing the asymmetry of the ribs (7), scoliometer or ATR readings (8), and standing radiograph of the spine is often used in scoliosis diagnosis. Investigating quality in life of patients with scoliosis is difficult, and has previously been assessed using a diverse range of measurement instruments (9-11). The present clinical standard is the Scoliosis Research Society questionnaire, version 22r (SRS22r), which is widely used, and has been validated in several languages (12-14). Among spine surgeons, it is generally considered a useful tool for estimating quality of life. Although it appears that when used on children, girls have worse pain and self-image than boys, while even healthy children experience pain, mental-health and self-image issues (15, 16). A recent meta ethnography (17) identified nine studies in total (18-26). Of these studies, one was focused on persons undergoing physiotherapy (26), one was focused on the patient experience prior to surgery (22), while the rest were either focused on the experiences with bracing (18, 20, 25) or surgery (19, 21, 23, 24). All identified studies focused on adolescents and young adults between age 10 and 22. A study from Hong Kong, emphasized the need for health care professionals to comprehend the experiences of patients with AIS (27), however only focusing on adolescents. Some studies have focused on the needs of the parents (28), or the patient experience with bracing (29), although they were not included in the meta ethnography. Lastly a scoping review and narrative synthesis explored the experiences of patients with AIS (30). They focused on adolescents, but established a need for further studies, especially with a focus on long-term implications of having scoliosis and undergoing treatment. Although AIS is a relatively common condition, focus has formerly been in the experiences around surgery, while not addressing long-term perspectives of persons living with AIS. We therefore aim to explore the perspectives of persons living with AIS on the health care guidance they received, the considerations and restrictions their scoliosis brought with it, and the perspectives of living as an adult with scoliosis, in order for clinicians to comprehend the long term implication of living with scoliosis in relation to what treatments should be considered. 1. THE BASIC ANATOMY OF SCOLIOSIS | Bone & Joint. 2. Kouwenhoven J-WM, Castelein RM. The Pathogenesis of Adolescent Idiopathic Scoliosis: Review of the Literature. Spine. 2008;33(26):2898. 3. Lonstein JE, Bjorklund S, Wanninger MH, Nelson RP. Voluntary school screening for scoliosis in Minnesota. JBJS. 1982;64(4):481-8. 4. Weinstein SL, Dolan LA, Cheng JC, Danielsson A, Morcuende JA. Adolescent idiopathic scoliosis. The lancet. 2008;371(9623):1527-37. 5. Xu S, Li K, Jin L, Dong Y, Liang Y, Liu C, et al. Distribution of scoliosis in 2.22 million adolescents in mainland China: a population-wide analysis. Journal of Global Health. 2024;14:04117. 6. Castelein RM, Pasha S, Cheng JC, Dubousset J. Idiopathic scoliosis as a rotatory decompensation of the spine. Journal of Bone and Mineral Research. 2020;35(10):1850-7. 7. Fairbank J. Historical Perspective: William Adams, the Forward Bending Test, and the Spine of Gideon Algernon Mantell. Spine. September 1, 2004;29(17). 8. Bunnell WP. An objective criterion for scoliosis screening. JBJS. 1984;66(9):1381-7. 9. Weinstein SL, Dolan LA, Spratt KF, Peterson KK, Spoonamore MJ, Ponseti IV. Health and function of patients with untreated idiopathic scoliosis: a 50-year natural history study. Jama. 2003;289(5):559-67. 10. Grauers A, Topalis C, Möller H, Normelli H, Karlsson MK, Danielsson A, et al. Prevalence of back problems in 1069 adults with idiopathic scoliosis and 158 adults without scoliosis. Spine. 2014;39(11):886-92. 11. Danielsson AJ, Wiklund I, Pehrsson K, Nachemson AL. Health-related quality of life in patients with adolescent idiopathic scoliosis: a matched follow-up at least 20 years after treatment with brace or surgery. Eur Spine J. 2001;10:278-88. 12. Simony A, Carreon LY, Andersen MO. Reliability and validity testing of a Danish translated version of the Scoliosis Research Society Instrument-22 Revised (SRS-22R). Spine deformity. 2016;4(1):16-21. 13. Monticone M, Baiardi P, Calabrò D, Calabrò F, Foti C. Development of the Italian version of the revised Scoliosis Research Society-22 Patient Questionnaire, SRS-22r-I: cross-cultural adaptation, factor analysis, reliability, and validity. Spine. 2010;35(24):E1412-E7. 14. Danielsson AJ, Romberg K. Reliability and validity of the swedish version of the scoliosis research society-22 (SRS-22r) patient questionnaire for idiopathic scoliosis. Spine. 2013;38(21):1875-84. 15. Torén S, Diarbakerli E. Health-related quality of life in adolescents with idiopathic scoliosis: a cross-sectional study including healthy controls. Eur Spine J. 2022;31(12):3512-8. 16. Diarbakerli E, Grauers A, Gerdhem P. Population-based normative data for the Scoliosis Research Society 22r questionnaire in adolescents and adults, including a comparison with EQ-5D. Eur Spine J. 2017;26:1631-7. 17. Hannink E, Toye F, Newman M, Barker KL. The experience of living with adolescent idiopathic scoliosis: a qualitative evidence synthesis using meta-ethnography. BMC pediatrics. 2023;23(1):373. 18. Donnelly MJ, Dolan LA, Grande L, Weinstein SL. Patient and parent perspectives on treament for adolescent idiopathic scoliosis. The Iowa orthopaedic journal. 2004;24:76. 19. Honeyman C, Davison J. Patients' experience of adolescent idiopathic scoliosis surgery: a phenomenological analysis. Nursing children and young people. 2016;28(7). 20. Law D, Cheung M-c, Yip J, Yick K-L, Wong C. Scoliosis brace design: influence of visual aesthetics on user acceptance and compliance. Ergonomics. 2017;60(6):876-86. 21. MacCulloch R, Donaldson S, Nicholas D, Nyhof-Young J, Hetherington R, Lupea D, et al. Towards an understanding of the information and support needs of surgical adolescent idiopathic scoliosis patients: a qualitative analysis. Scoliosis. 2009;4:1-9. 22. Motyer GS, Kiely PJ, Fitzgerald A. Adolescents' experiences of idiopathic scoliosis in the presurgical period: a qualitative study. Journal of pediatric psychology. 2022;47(2):225-35. 23. Rullander A-C, Isberg S, Karling M, Jonsson H, Lindh V. Adolescents' experience with scoliosis surgery: a qualitative study. Pain Management Nursing. 2013;14(1):50-9. 24. Rullander A-C, Lundström M, Östlund U, Lindh V. Adolescents' experiences of scoliosis surgery and the trajectory of self-reported pain: a mixed-methods study. Orthopaedic Nursing. 2017;36(6):414-23. 25. Sapountzi-Krepia D, Psychogiou M, Peterson D, Zafiri V, Iordanopoulou E, Michailidou F, et al. The experience of brace treatment in children/adolescents with scoliosis. Scoliosis. 2006;1:1-7. 26. Williams MA, Heine PJ, Williamson EM, Toye F, Dritsaki M, Petrou S, et al. Active treatment for idiopathic adolescent scoliosis (ACTIvATeS): a feasibility study. Health technology assessment (Winchester, England). 2015;19(55):1. 27. Li J, Chan EA, Li M, Lam YP, Wong AY, Cheung JPY, et al. "Am I different?" Coping and mental health among teenagers with adolescent idiopathic scoliosis: A qualitative study. Journal of pediatric nursing. 2024;75:e135-e41. 28. Willson LR, Rogers LG, Gingrich N, Shearer K, Hryniuk SS. Meeting the needs of parents of children with scoliosis: a qualitative descriptive study. Global Qualitative Nursing Research. 2021;8:23333936211045058. 29. Cheung M-C, Law D, Yip J, Cheung JPY. Adolescents' experience during brace treatment for scoliosis: A qualitative study. International journal of environmental research and public health. 2022;19(17):10585. 30. Płaszewski M, Grantham W, Jespersen E. Mapping the evidence of experiences related to adolescent idiopathic scoliosis: a scoping review protocol. BMJ open. 2019;9(11):e032865.

Description of the cohort

A series of semi-structured interviews will be conducted. The informants will be included using network, social media, physiotherapy clinics and former cohorts, based on the following criteria - Women with a scoliosis and > 25 degrees cobb angle on standing radiographs - Age 25-40 years. Patients will be included across the age range, and across treatment categories, in order to get a wide variation of experiences. Patients with other comorbidities, that influence of their everyday life, patients suffering from neuromuscular disease, patients unable to ambulate or patients diagnosed with a mental disorder is excluded from the study. The interviews will be conducted as face-to-face interviews, at a location chosen by the informant, in order for them to feel well and secure during the interview, as the subjects are personal and private. Should the informant wish so, alternatives in form of video or telephone interviews will be conducted. Informants will be included from patients associations, patient's advisory boards and scoliosis clinics. Interviews will be conducted until data saturation has been achieved. Which is expected to be achieved around 10-12 patients (18, 20, 21).

Data and biological material

Interview data from semi-structured interviews

Collaborating researchers and departments

Department of Urology, Vejle Hospital, University Hospital of Southern Denmark, Odense, Denmark

• Astrid Næraa Høeg Vendelsøe

Department of Orthopedic Surgery, University Medical Center Utrecht, The Netherlands

• Rene Castelein

Department of Pediatric and Adolescent Medicine, Gødstrup Hospital, Denmark

• Luise Borch

Center for Shared Decision Making, Lillebaelt Hospital, University Hospital of Southern Denmark, Vejle, Denmark, Institute of Regional Health Research, University of Southern Denmark, Odense, Denmark

• Lea Lund

Department of Orthopedic Surgery, The Region of Southern Denmark University Hospital, Sygehusvej 24, 6000 Kolding, Denmark

• Ane Simony