The patient generated index and decision regret in adolescent idiopathic scoliosis.

Abstract

AIS patients and their parents will have distinct perspectives regarding the impact of AIS on patients' lives. Current outcome assessment tools for AIS do not fully assess patient-specific disease impact and fail to distinguish between patient and parent perspectives. Patient Generated Index (PGI) has been used in other disease states to assess individual experiences. This study assesses PGI in operative AIS patients and their parents. Level 1, prospective multi-center study. 44 AIS patient and parent pairs completed the PGI questionnaire comprised of three stages (S1, S2, S3) and decision regret (DR). S1 asks for five areas of the patient's life most affected by AIS and a 6th encompassing all other areas of their lives affected, S2 focuses on the magnitude of effect, S3 identifies desire to improve affected areas and DR if the surgery did not improve the specific area. S1 free responses were organized into 14 domains. Descriptive statistics were reported for stage scores; free-response format of PGI and DR limited ability for paired sample t test analysis. Mean age at surgery was 14.3 years, 84% female, and mean major curve magnitude was 61°. The three most common patient-reported concerns prior to surgery were (in descending order): sports, general function, and general fitness. However, the three most common parent-reported concerns were (in descending order): general function, sports, and appearance. Patients reported self-esteem and parents reported physical appearance as the most affected domain (S2). Patients reported pain and self-esteem and parents reported sleep and self-esteem as main operative aspirations (S3). Decision regret was the highest for uncertainty of future health in patients and sleep in parents. AIS patients and their parents reported different concerns and DR regarding surgical treatment. PGI provides insight into patient and parent views toward the disease as well as treatment aspirations.