Short Term Health Related Quality of Life and Family Burden after Surgical or Casting Treatment Hiroko Matsumoto, Nicholas Feinberg, Julie Yoshimachi,

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Short Term Health Related Quality of Life and Family Burden after Surgical or Casting Treatment Hiroko Matsumoto, Nicholas Feinberg, Julie Yoshimachi, David P. Roye, Behrooz A. Akbarnia, Sumeet Garg, James O. Sanders, David L. Skaggs, John T. Smith, Michael G. Vitale, Children’s Spine Study Group, and Growing Spine Study Group

-Disclosures- 1. Hiroko Matsumoto: A; Children's Spine Foundation, Scoliosis Research Society, Pediatric Orthopaedic Society of North America, Cerebral Palsy Foundation. B; Children's Spine Foundation 2. Nick Feinberg: None3. Julie Yoshimachi: None 3. David Roye Jr.: A; Children's Spine Foundation, Scoliosis Research Society, Pediatric Orthopaedic Society of North America, Cerebral Palsy Foundation, BroadWater, Inc., OMeGA Medical Grants, Biomet. B; Travel: Stryker, Cerebral Palsy Foundation, JBJS Reviewer, Other: Cerebral Palsy Foundation, Other: CMO Children of China, Other: CEO President International Healthcare Leadership, Other: CMO Global Health Pass. E; Travel: Biomet, Travel: Medtronic, Travel: DePuy Synthes, Travel: Stryker. 4. Behrooz Akbarnia: A; DePuy Spine, Nuvasive, Ellipse. B; Board: Growing Spine Foundation, Editorial: Journal of Orthopaedic Science, Nuvasive, K2M, Ellipse, K Spine, Board: Scoliosis Research Society, Editorial: Spine, Editorial: Spine Deformity. D; Alphatec Spine, Nuvasive, Ellipse, K Spine, Nocimed. F; DePuy, A Johnson & Johnson Company, K2M, Nuvasive, Springer 5. Sumeet Garg: B; Medtronic 6. James O. Sanders: B; Board: AAOS, Board: Pediatric Orthopaedic Society of North America, Board: Scoliosis Research Society. D; Abbott, Abbvie, GE Healthcare, Hospira 7. David L. Skaggs: B; Biomet, Grand Rounds, Board: Growing Spine Foundation, Board: Growing Spine Study Group, Editorial Board: Journal of Children's Orthopaedics, Medtronic, Orthobullets, Board: Scoliosis Research Society, Editorial: Spine Deformity, Zipline Medical Inc.. C; Paid Presenter/Speaker: Johnson & Johnson, Paid Presenter/Speaker: Medtronic. F; Biomet, Wolters Kluwer Health Lippincott Williams & Wilkins 8. John T. Smith: B; Biomet, Ellipse Technologies, Globus Medical, Spineguard, Synthes, Board: Children's Spine Foundation. F; Synthes 9. M.G. Vitale: A; Children's Spine Foundation, Scoliosis Research Society, Pediatric Orthopaedic Society of North America, Orthopaedic Science Research Foundation, BroadWater, Inc., OMeGA Medical Grants, Biomet, Board: Children's Spine Foundation, Board: Pediatric Orthopaedic Society of North America, Board: International Pediatric Orthopaedic Symposium. B; Stryker, Biomet. E; Travel: Biomet, Travel: Medtronic, Travel: DePuy Synthes, Travel: Stryker, Travel: Fox, Travel: Children's Spine Foundation. 10. Children’s Spine Study Group: A; Children's Spine Foundation, DePuy Synthes 11. Growing Spine Study Group: A; Growing Spine Foundation

To describe the changes HRQoL and Family Burden of patients with EOS who underwent treatment with surgery or casting Purpose: Retrospective Study vs.

Design: Retrospective, multi-center study of HRQoL after surgery or casting, measured via the EOSQ-24 Participants: Inclusion: Early Onset Scoliosis (EOS) 3.0 – 9.9 years of age Undergoing treatment with growing instrumentation, or casting Able to Complete EOS Questionnaire (EOSQ-24) in English or Spanish Exclusion: Unable to complete EOSQ-24 Outcomes: Health-Related Quality of Life −EOSQ-24 pre-treatment −EOSQ-24 at 6 months post-treatment −EOSQ-24 at 12 months post-treatment Methods

Non-Idiopathic Patient Characteristics Total (n) = 58CastingSurgeryP-value Subjects (n)949 (yo)2.8 ± ± 2.8<0.005 Gender56% male49% male Cobb (deg)54.0 ± ± Etiology Congenital217 Neuromuscular420 Syndromic312 Days between 1 st and last intervention EOSQ ± ± 83.1<0.001 Completed Pre-EOSQ (n) 949 Completed Post EOSQ (n) 948 Completed Post- Lengthening EOSQ (n) -39

Idiopathic Patient Characteristics Total (n) = 22CastingSurgeryP-value Subjects (n)148 (yo)1.7 ± ± 2.9<0.001 Gender57% male22 % male Cobb (deg)50.1 ± ± EtiologyIDIOPATHIC Days between 1 st and last intervention EOSQ ± ± Completed Pre-EOSQ (n) 148 Completed Post EOSQ (n) 148 Completed Post- Lengthening EOSQ (n) -6

Non-Idiopathic Surgery Total Complications15 Minor Complications12 Major Complications3 Results: Surgical Complications Idiopathic Surgery Total Complications2 Minor Complications2 Major Complications- No records of complications were kept for the casting groups

Results: Non-Idiopathic Casting Patients Total (n) = 9Pre-EOSQPost-EOSQP-Value HRQoL Subdomain General Health 70.8 ± ± Pain/Discomfort 81.9 ± ± Pulmonary Function 87.5 ± ± Transfer 77.8 ± ± Physical Function 68.5 ± ± Daily Living 52.8 ± ± Fatigue/Energy Level 76.4 ± ± Emotion 87.5 ± ± Parental Burden 67.8 ± ± Financial Burden 61.1 ± ± Overall HRQoL 74.2 ± ± Overall Parental Domain 67.8 ± ± Overall Financial Domain 56.3 ± ±

Results: Non-Idiopathic Surgery Patients Total (n) = 49Pre-EOSQPost-EOSQ3 rd EOSQ P-Value (Pre vs. 3 rd EOSQ) HRQoL Subdomain General Health 67.3 ± ± ± Pain/Discomfort 74.7 ± ± ± Pulmonary Function 74.7 ± ± ± Transfer 75.5 ± ± ± Physical Function 65.3 ± ± ± Daily Living 50 ± ± ± Fatigue/Energy Level 67.8 ± ± ± Emotion 76.1 ± ± ± Parental Burden 58.1 ± ± ± Financial Burden 65.6 ± ± ± Overall HRQoL 66.8 ± ± ± Overall Parental Domain 58.1 ± ± ± Overall Financial Domain 65.6 ± ± ±

Results: Idiopathic Casting Patients Total (n) = 14Pre-EOSQPost-EOSQP-Value HRQoL Subdomain General Health 73.2 ± ± Pain/Discomfort 91.9 ± ± Pulmonary Function 93.8 ± ± Transfer 98.2 ± ± Physical Function 88.1 ± ± Daily Living 82.1 ± ± Fatigue/Energy Level 84.6 ± ± Emotion 96.6 ± ± Parental Burden 78.7 ± ± Financial Burden 75 ± ± Overall HRQoL 85.2 ± ± Overall Parental Domain 78.7 ± ± Overall Financial Domain 75 ± ±

Results: Idiopathic Surgery Patients Total (n) = 8Pre-EOSQPost-EOSQ3 rd EOSQ P-Value (Pre vs. 3 rd EOSQ) HRQoL Subdomain General Health 82.8 ± ± ± Pain/Discomfort 70.3 ± ± ± Pulmonary Function 70.3 ± ± ± Transfer 100 ± ± ± Physical Function 95.2 ± ± ± Daily Living 89.1 ± ± Fatigue/Energy Level 90.6 ± ± ± Emotion 81.3 ± ± ± Parental Burden 79.0 ± ± ± Financial Burden 45.8 ± ± ± Overall HRQoL 81.9 ± ± ± Overall Parental Domain 79.0 ± ± ± Overall Financial Domain 45.8 ± ± ±

Result Highlights EtiologyTreatmentDomainChange (%)P-Value Idiopathic Surgical Pulmonary Function Fatigue / Energy Level Casting Transfer Daily Living Physical Function Emotion Non-Idiopathic Surgical Pulmonary Function CastingEmotion

Conclusions Patients treated surgically (idiopathic and not idiopathic) had an improved parental impression of patient pulmonary function but little change in other aspects of HRQoL By contrast, casting appears to be associated with decreasing QoL scores in multiple domains