The reunion with my patients: their journey and experience 30 years after their intervention for adolescent idiopathic scoliosis via CD instrumentation

Purpose Our objective was to collect the experience and current attitude of those patients, now adults, operated on for adolescent idiopathic scoliosis (AIS) more than 25 years ago with CD instrumentation (CDI). Methods Prospective qualitative cross-sectional study with interpretive phenomenological analysis approach of AIS patients operated in a single center with CDI between 1985 and 1995. Patients underwent a semi-structured interview with their original surgeon. Seven agreed themes were open for conversation, and several subthemes emerged related to their experience during their journey in life. Filed notes were recorded and transcribed verbatim. We used the method of content, semantic and pragmatic analysis. Results We contacted 103 patients, 100 agreed to participate. Mean age was 47.5 ± 3.3, mean follow-up was 30.9 ± 2.7 years. Three fundamental concerns stood out: discomfort with self-image; low back pain with daily activities; and lack of spinal flexibility. 50% were engaged in continuous physical exercise, and only some referred limitations with load-bearing work. Patients commonly described negative memories of the conservative treatment, but positive memories of the surgical process. In general, there was a good adaptation to social life (occupation, social and family relationships). Two-thirds were married, and 65 women had offspring. A frequent concern was the excess of radiographs over the years, and three developed breast cancer. Conclusions Factors such as dissatisfaction with self-image, low back pain, and spine stiffness were relevant to patients throughout their journeys. Despite this, the great majority were satisfied with the treatment received, which allowed them to lead an integrated life in society. Level of evidence Level II.