An evaluation of the information needs of people with adolescent idiopathic scoliosis at the point of first diagnosis at the hospital clinic: Final Report

Executive Summary
Background: The Patients Charter (1992) clearly states that patients` have a right to information about their condition. In patients with Adolescent Idiopathic Scoliosis very little is known about the information provided to patients and their families as well as the information needs of service users. Failure to fully address patients’ and their families’ health information requirements can lead to significant stress and anxiety.
Objectives: This research was commissioned by the British Scoliosis Research
Foundation to evaluate patients’ information needs at the first point of diagnosis with adolescent idiopathic scoliosis at hospital (AIS).
Design of the research study: A mixed methods approach was used and
comprised six independent studies which address the same major aim. Together the studies present a holistic picture of the information needs of people with AIS.
Methods: This report includes a literature review, interviews conducted with patients at one Centre in the North East of England and supplemented by a national survey of UK clients with AIS, a survey of UK NHS Consultants, an analysis of information contained on Websites recommended by UK surgeons to patients, and a content analysis of a sample of UK hospital materials currently provided to patients.
Results: Both parents and young people identified a need for additional information. It was clear that verbal information alone was not sufficient to address that need. The findings from the study also supported the need for access to information in the period between GP referral and the visit to the consultant. There is also a view that general posters and leaflets on scoliosis should be available at GP surgeries as a way of raising general awareness of the condition. Furthermore it was suggested that awareness of the condition should be improved within school environments. There is a need for all information to be user friendly and in a language that is easily understandable. Separate information packs using different formats for parents and young people are felt to be more beneficial in addressing the information needs of both groups. Young people also felt that some guidance on how to talk about their condition, and what it means, with their friends was important as many did not know how to do this. The opportunity to communicate with others suffering from AIS, listen to their experiences and to learn from each other was felt to be an important step forward in meeting the information needs of young people.
Conclusions: AIS is a life-changing diagnosis for young people and their families. Patients and families have a need for good quality information at the point of diagnosis so they are able to make informed choices about their treatment. Currently the quality and range of information available is inadequate and needs to be strengthened.