An Investigation of the Information Needs of Adolescent Idiopathic Scoliosis Patients and their Families

  • Shaun Wellburn

    Student thesis: Doctoral Thesis


    Introduction. Scoliosis is a complex multifactorial condition the cause and prognosis of which are poorly understood. Consequently, the appropriate treatment pathway requires careful consideration. Shared decision-making is a process advocated by the Government in patient healthcare. A shared decision-making process involves negotiation and exchange of information between healthcare professionals and patients. To this end, it is imperative that patient information needs are met in order to allow such a process to occur.
    Aim. The primary aims of this programme of work were: to investigate the information needs of adolescent idiopathic scoliosis (AIS) patients and their families; examine the referral characteristics of AIS patients; and evaluate the quality of information on scoliosis specific Web sites.
    Methods. This programme of work consisted of five studies: 1) a survey of scoliosis consultants, 2) an examination of the referral characteristics of AIS patients at the point of referral, 3) a series of semi-structured interviews with AIS patients and their parents, 4) an online survey of AIS patients and parents, 5) an analysis of the quality of information on a sample of scoliosis-specific Web sites.
    Results. Surgeons (n=14) reported that questions they were most asked related to the cause and prognosis of the condition. Where information was provided, the main topic of importance was surgery. Surgeons highlighted the Web sites they were most likely to recommend to AIS patients and their parents. A total of 111 patients’ data were recorded, the mean age of whom was 14 years, and 80% of these were female. A variety of curve types were observed and curve magnitude ranged from 80 – 12 degrees Cobb. The main curve in females was found to be significantly larger than in their male counterparts (p = 0.011, z = -2.545). The results of 15 semi-structured interviews and 89 responses to an online survey indicated that there was a disparity in information received by AIS patients and their parents. The participants’ information needs varied depending on the individual diagnosis and prognosis of their condition. The quality of information of the seven scoliosis-specific Web sites analysed was poor.
    Conclusions. This programme of work identified an inconsistency, in terms of quantity, quality and relevance, in the information provided to AIS patients and their families. Consequently, there is variation in the level of satisfaction of AIS patients and their families in the information they receive. Recommendations are that there is a need for high quality, evidence-based, individualised information. The presentation of such information should be in plain language and supplemented with pictures where appropriate. In addition, this should be complemented by the provision of a resource enabling communication with other AIS patients and the availability of a reliable, up-to-date Internet resource.
    Date of Award12 Jun 2017
    Original languageEnglish
    Awarding Institution
    • Teesside University
    SupervisorJosette Bettany-Saltikov (Supervisor), Paul Van Schaik (Supervisor) & Sharon Hamilton (Supervisor)

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