Abstract
Background: Despite the benefits of quality information material, there is a dearth of research on the information needs of people with scoliosis (PwS). The aim of this study was to identify the information needs of PwS including preferences for the presentation of benefit/ risk information, in order to inform the design of written information for this population.
Methods: A questionnaire-based design was used to identify the importance attached to characteristics of information material, scoliosis-related knowledge, preferred treatment decision-making role, preferences for presentation of risk information and current information needs. A sample of 73 PwS (86% female, mean age 41.9 years). The majority (74%) had at least an A’ level standard of education and 60% had undergone some type of surgery. The importance of 13 characteristics of information material was assessed using criteria described by previous research1. PwS were asked to rate their level of knowledge on 20 scoliosis-related topics. The Control Preference Scale was used to assess treatment decision-making role. Preferences for the presentation of risk information was assessed in terms of (a) absolute versus relative risk, (b) loss versus gain information, and (c) perceived clarity of different methods for presenting benefit/risk information. An open-ended question requested PwS to state their current information needs.
Results: Characteristics of information material assigned the highest importance were: information on benefits/ risks of treatment; coverage of all relevant treatments; and clear information on probability of benefits/risks of treatments. Scoliosis-related knowledge was rated below average for 14 of the 20 topics. The majority (88%) expressed a preference for an active or collaborative role in treatment decisions. The majority also preferred to be presented with information on benefits/ risks in both absolute and relative terms, and informed of both loss and gain information. Bar graphs and pie charts were assigned the highest clarity ratings for the presentation of benefit/risk information. Content analysis revealed 27 mutually exclusive categories of current information needs and the rank order of the top 3 were: psychological services and psychosocial support; surgery; and aftercare and self-management.
Conclusion: PwS lack knowledge about their condition, desire both psychological and medical information and wish to be involved in treatment decisions. Based on the results, written information will be designed to address the salient information needs of PwS. It is anticipated, following further evaluation that these materials could be used to impact positively upon clinical outcomes such as psychosocial functioning, patient satisfaction and participation in shared decision-making.
The abstracts were prepared by Mr Colin E. Bruce. Correspondence should be addressed to Colin E. Bruce, Consultant Orthopaedic Surgeon, Alder Hey Children’s Hospital, Eaton Road, Liverpool, L12 2AP.
References:
1 Coulter A, Entwistle V, Gilbert D. Sharing decisions with patients: is the information good enough? British Medical Journal, 1999; 318: 318–322. Google Scholar
