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

Johan L. Heemskerk, Nienke W. Willigenburg, Ben E. E. M. J. Veraart, Eric. W. Bakker, René M. Castelein, Mark C. Altena, Diederik H. R. Kempen

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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 non-surgically 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 non-surgically 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.
Original languageEnglish
JournalSpine Journal
Early online date2023
Publication statusE-pub ahead of print - 2023


  • Back pain
  • Brace
  • Bracing
  • Congenital scoliosis
  • EOS, early-onset scoliosis
  • HRQoL, health-related quality of life
  • JIS, juvenile idiopathic scoliosis
  • Long-term outcome
  • ODI, Oswestry Disability Index
  • QoL, quality of life
  • Refined SRS-22r
  • SF-36
  • Scoliosis Research Society 22-item Questionnaire
  • Surgery
  • Treatment

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