Heath-related quality of life and functional outcomes in patients with congenital or juvenile idiopathic scoliosis after an average follow-up of 25 years: a cohort study

BACKGROUND CONTEXT: Congenital and juvenile scoliosis are both early-onset deformities that develop before the age of 10. Children are treated to prevent curve progression and problems in adulthood such as back pain and a decreased quality of life but literature on long-term outcomes remains scarce. PURPOSE: To evaluate the health-related quality of life (HRQoL) and potential disability of children with congenital scoliosis (CS) or juvenile idiopathic scoliosis (JIS) after a minimum of 20 years follow-up. STUDY DESIGN: Comparative cohort study. PATIENT SAMPLE: A consecutive cohort of CS and JIS patients were retrospectively identified from a single-center scoliosis database. Patients born between 1968 and 1981 and treated during skeletal growth were eligible for participation. OUTCOME MEASURES: HRQoL (SF-36, SRS -22r, ODI). METHODS: The primary aim was to evaluate the HRQoL of CS and JIS patients using the general SF-36 questionnaire. Both patient cohorts were compared with age-matched national norms. The secondary aim was to analyze the differences between conservatively and surgically treated patients using the scoliosis-specific Scoliosis Research Society -22r questionnaire (SRS -22r) and the Oswestry Disability Index (ODI). T -tests were used for statistical comparison. RESULTS: In total, 114 patients (67% of the eligible patients) completed the questionnaire, with a mean follow-up of 25.5 +/- 5.5 years after their final clinical follow-up. Twenty-nine patients with CS were included with a mean age of 44.4 +/- 3.8 years (79.3% female), and 85 patients with JIS with a mean age of 43.7 +/- 4.2 years (89.4% female). Of the SF-36 domains, only the vitality score (60.6 +/- 18.0 for CS and 58.1 +/- 17.6 for JIS cohort) and mental health score (70.0 +/- 18.4 for CS and 72.1 +/- 18.1 for JIS cohort) were significantly lower compared with the general population (68.6 +/- 19.3 for vitality, and 76.8 +/- 17.4 for mental health). These decreased scores were larger than the determined minimum clinically important difference threshold of 4.37. Surgically treated JIS patients had a significantly lower score on the SRS -22r pain domain than their nonsurgically treated peers (3.6 +/- 0.9 vs 4.1 +/- 0.7l p=.019). Surgically treated CS patients had a significantly higher score on the SRS -22r mental health domain than their nonsurgically treated peers (4.3 +/- 0.5 vs 3.5 +/- 1.0; p=.023). No significant differences were found in the other domains. CONCLUSIONS: Except for vitality and mental health domains, congenital and juvenile idiopathic scoliosis patients treated during skeletal growth had similar HRQoL on most SF -36 domains in adulthood compared with national norms. Surgical treated JIS patients experienced more pain compared with brace treated patients, while braced CS patients had a significantly lower mental scores compared with surgical treated patients. These long-term outcomes are essential to inform patients and can guide shared decision -making between clinicians and patients. (c) 2023 Published by Elsevier Inc.