Patients' involvement in decision-making regarding their own health care is considered to be of great importance. However, their information needs are frequently reported to be unfulfilled. Few studies have investigated the knowledge, information and support needs of adolescent idiopathic scoliosis (AIS) patients and their families. Furthermore, previous studies have predominantly focussed on information needs relating to surgery. No previous studies have been conducted to specifically identify the information needs of AIS patients and their families. An online survey consisting of 18 questions was conducted to investigate the information needs of AIS patients and their families. Completed surveys of 83 participants (76 female, 7 male) from 44 differing postcode areas were analysed. The mean age of the respondents with scoliosis was 13.3 years (SD = 1.9; range = 10-18). Participants identified with feelings including worry, anxiety and being upset. The main information needs related to the cause and prognosis of the condition. Where participants had received information, there were contrasting views of the quality. The findings of this study stress the necessity for information materials to be accurate and applicable to each individual patient. Furthermore, the information should be presented in such a way as to be easily understandable, yet contain the necessary information required by AIS patients and their families.
Keywords: Scoliosis; adolescent; decision-making; families; individual; information; online; patient; quality; survey.