Adolescent idiopathic scoliosis (AIS) is a structural lateral curvature of the spine arising during puberty in otherwise normal children . While epidemiologic studies estimate 1-3% of adolescents (10 to 18 years) will develop scoliosis, only 1-5% of these adolescents will receive spinal instrumentation and fusion for progressive curvature of more than 40°-50°. The clinical course of untreated scoliosis as an adult is controversial . However, significant curves can cause deformity, increased frequency (although not necessarily severity) of back pain, decreased objective pulmonary function tests and in some patients, respiratory symptoms . Surgery involves placing rods, straightening, and fusing the spine. In addition to the loss of spinal motion, the surgery has potential complications of infection, nonunion, back pain, and paraplegia . The decision about surgery should involve consideration of the potential risks of both surgery and the clinical course of untreated scoliosis. Accordingly, considering spinal surgery for AIS involves a major decision for patients and their families, one that requires access to in-depth information and support throughout the decision-making process, surgery itself and recovery .
As Leonard and colleagues suggest, patients generally expect two things from the health care system: care and information . While most care must occur in-person, information regarding health care, including both general and personal health information and support in decision-making and illness management may be delivered in-person and/or via hard-copy or online resources. The internet has dramatically transformed how we deliver and share information. The internet allows information to be easily and widely accessed, updated, and shared. In health care, it can connect health care providers, health care institutions and patients. It may further serve to connect patients with one another, an exceptional capability, particularly for those who may be isolated due to illness severity, an uncommon diagnosis or geography. Therefore, it is not surprising that web-based resources are increasingly part of Canadians' experience of health care. In 2005, approximately 8.7 million Canadian adults went online to search for medical or health related information . Increasing use of the internet specifically for orthopaedic patients is also noted [6–8]. For instance, use of the internet for health information was reported by 55% of outpatients receiving an orthopaedic consultation. Of these, 52% had obtained online medical information, and 36% stated that they would accept medical consultation online . Health care institutions offering orthopaedic services and individuals with scoliosis have also used the internet to share and access information and support regarding scoliosis. These forums/media range from websites sharing professionally-delivered information regarding scoliosis and treatment to personal blogs chronicling an individual's unique experience living with scoliosis to networking sites such as Facebook which hosts a group called, "How to Look Good Twisted". These all serve to share information regarding scoliosis and connect orthopaedic health care providers and individuals with scoliosis. Furthermore, preliminary research demonstrates that the delivery of health care information via the internet has been linked to positive patient outcomes, user satisfaction and cost-effectiveness [9, 10].
As an open-sourced, often un-moderated and evolving medium, the internet has a seemingly limitless and expanding capacity to share information and connect people. However, these very benefits may also pose significant challenges. Despite extensive online utilization for health purposes, accuracy of information is often suspect [11–14]. A quick internet search on any health topic often reveals a staggering quantity of information of varying degrees of credibility. This is particularly concerning given that presentation and graphic quality influence use more than the integrity of website content [15–19]. Website quality and mode of presentation are therefore critical if websites are to be used effectively. Unfortunately, most current online resources emulate the deficiencies of current clinical practice by providing incomplete and inconsistent information and minimal or no venue for social support. For a patient and their family, this can lead to frustration and misinformation, which in turn may hinder informed decision-making.
A review of traditional (non-web-based) patient information and support literature in scoliosis using conventional retrieval sources such as MedLine, CINAHL, M(edica) (European and Asian Orthopaedics and Rehabilitation search engine), as well as web-based resources using health website search engines (e.g., sympatico http://www1.sympatico.ca, Yahoo Health http://www.yahoo.com/Health/Children_s_Health) was conducted in 2005 to determine the quantity and quality of existing information and support resources for AIS patients and their families. This review comprised a quantitative competitive analysis using the DISCERN, a 16-item standardized instrument [20, 21] that assesses the quality of written information about treatment and health websites. A total of 22 websites were included in the review. Each website was independently evaluated by 2 reviewers. Only 7 out of the 22 websites scored at least 70% or higher on the DISCERN with a mean overall score of 63/80. However, the quality of these 7 websites remained compromised by unclear and/or unmet aims, lack of relevance to consumers, currency of information and unclear and unbiased sources of information. Specifically, this analysis revealed existing websites tend to lack a source (i.e. a reference), content based on levels of evidence, and specific Canadian content. Websites demonstrated failure to identify content authorship, poor graphics, poor readability and appeared to target only females. Several websites integrated product endorsement, thereby introducing a potentially confusing and biased mix of patient/parent information and industry promotion and benefit. None of these websites appeared to have formally considered the needs of families . Furthermore, none of the existing scoliosis websites provided any specific family support beyond text information. Thus, this competitive analysis revealed an overall lack of evidence-based information, poor usability, and no mechanisms for family support. In addition, as expected with primarily U.S. based websites, the information provided was not particularly relevant to the Canadian Health Care context. This review also revealed a lack of useable, interactive online opportunities that (1) catered to both patients and parents, (2) integrated an array of evidence-based information and support, (3) was interactive and engaging, and (4) provided health professional moderated peer-based support. This review revealed a clear need for a credible, regionally-relevant information and support resource tailored to both male and female patients considering surgery for scoliosis and their families.
In redressing the gaps currently existing in online information and support for adolescents with AIS, the purpose of this study was to develop an online information and support resource for patients and their families considering AIS surgery. Because of limited face-to-face clinic time and the importance of informed decision-making, finding comprehensive yet efficient ways to provide the patient and their family with information and support should be considered a priority. Furthermore, the development of such a website has the potential to increase knowledge, social support and coping for patients considering surgery for AIS and their families. It further offers the potential to serve as a learning tool for health professionals by offering scoliosis-based educational content, providing access to appropriate links, and exemplifying an innovative patient-centred model for knowledge transfer. Finally, the website may move beyond simple information provision by adding an integrated mechanism for professionally-moderated online peer support.